DD14 gluten issue...I think. Any ideas?

Discussion in 'disABILITIES!' started by scottmel, Jan 22, 2013.

  1. scottmel

    scottmel <font color=darkorchid>Does my logic in my origina

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    Hello my DD14 was tested for celiacs disease and had her gallbladder, etc. ultrasounded. Blood Work, etc. Nothing seemed out of the ordinary to me on the blood work C reactive portein was <.02. I understand from different people that there is no one clear cut test for gluten.

    In the meantime, I ran into a friend whose daughter had similar issues to mine. Aching stomach after eating, moodiness and foggy brain as DD calls it. Hard to concentrate. My friend mentioned a gluten free diet and I am giving it a try. So far DD says she feels better. Stomach hasn't hurt in 2 weeks!

    Can anyone give me any good tips for websites or apps etc. to determine WHAT is gluten free? Obviously we don't have the allergy where it is life threatening so I THINK she can have something that maybe shares a facility where gluten products are manufactured but these products can't say "gluten free" b/c of this risk.

    Any ideas on a good resource? I bought the dummies book for starters....
    And fyi if it means anything here IgA is 145...Thanks!
     
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  3. disfan07

    disfan07 DIS Veteran

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    And IgA of 145 is actually in the normal range? Normal range is like 80-400 I think....something like that. I just know that mine is low....it's 40.

    Did your daughter ever have an upper endoscopy to test for celiac? From what my GI said, that is a more definitive way to get a diagnosis rather than the blood tests.

    I just went gluten free about 6 1/2 months ago because I developed a wheat allergy. It is actually not all that difficult IF gluten is the only thing you are avoiding. I am also allergic to eggs, nuts, oats, and many other things so it makes it more difficult.

    Many products that are gluten free are now labeled as such. But what you have to remember is that something labeled as "wheat free" is NOT the same as gluten free. A lot of cereals are wheat free but still contain things like malt flavoring which is NOT gluten free.

    There are a lot of sites that can direct you towards what is and is not gluten free. Gluten free products are more expensive so just be prepared for your grocery bill to jump but if t works it's worth it.

    But if she has not had an endoscopy, talk to her GI because that needs to be done. But she cannot be gluten free for that test because it could come back a false negative.

    And as for the may contain, made in the same facility, it all depends on tolerance levels of gluten. I know some people with celiac who have no problems with cross contamination and some that do. I usually avoid "may contain" just because mine is an allergy.

    And that is a normal CRP as far as I know. Normal CRP range is 0-5 (at least it is if it is the same test I had)

    If its stomach problems she is having, has she been tested for allergies? I know one of my main symptoms of allergic reactions (especially severe reactions) is intense GI pain. If she hasn't been tested it might be worth doing that.
     
  4. clanmcculloch

    clanmcculloch DIS Veteran

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    The absolute easiest way to start a gluten free diet is with fresh foods. That mean unprocessed meats, fruits, veggies, dairy (I'd skip cheeses with cultures such as blue cheese for now as well as anything that has multiple ingredients on the label). This gives you time to figure out how to read labels.

    You're lucky that these days there are a lot of gluten free products available on the market. This makes it so much easier and cheaper than it was even 10 years ago.

    FYI: Wal-Mart makes all of the companies that produce their Sam's line of products clearly label for gluten.

    I understand that these days there are apps available but we've got so many other food we avoid that an app just for gluten wouldn't make sense for that. Sites like celiac.com's message boards are great resources for products and tools. Back when I was first learning about gluten, I also found that the yahoo group Silly Yaks (say it out loud; isn't that cute?) was an amazing resource for information about products and tools. I haven't checked it out in several years so I don't know if it's still good or not, but back then it was amazing. The files section had great lists of products and even things like restaurant lists by city and seemed to get well maintained.

    Low CRP is good. That means very little inflamatory process going on.

    When you say her IgA is 145, do you mean total IgA or a specific antibody?

    I know you didn't ask, but I've read very mixed reviews (I've read really good and really bad) of BC CL gluten free. The CS options at BC/YC for gluten free are minimal. There are some including Babycakes products being available, but not a lot.
     
  5. KristenFNJ

    KristenFNJ Mouseketeer

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    I would have the same questions regarding the blood tests. If her Total IgA Serum is 145, that's normal. If her tTg IgA result is 145, that's high positive for celiacs. I would try very hard to get this whole panel of blood tests done as soon as possible. And gluten ingestion is necessary. I would even go ahead and try to get the endoscopy/biopsy on the calendar asap because her symptoms are so uncomfortable, so compatible with celiacs, and clear up when going gluten free. I know it sucks to think about putting her back on gluten, but it's REALLY REALLY important to get the diagnosis correct. Celiacs have a lot more than just stomach trouble... because the intestines get damaged and nutrition is not absorbed, you have to be tested for anemia, bone loss, vitamin deficiencies, and her growth could be jeopardized. And every time the autoimmune response is activated, the chances of other, scarier conditions increase (hence the need to avoid cross contamination is very serious). So if you move forward with the thinking that cross contamination won't be harmful she could end up really sick. :(

    The following is usually considered to be a complete celiac panel:

    Anti-Gliadin (AGA) IgA
    Anti-Gliadin (AGA) IgG
    Anti-Endomysial (EMA) IgA
    Anti-Tissue Transglutaminase (tTG) IgA
    Deamidated Gliadin Peptide (DGP) IgA and IgG
    Total Serum IgA

    The last test is a control to make sure that normal amounts of IgA are produced, otherwise the IgA results aren't valid, and the IgG results (which are not as specific to celiac's) are the main indicators.

    (HLA-DQ2 and HLA-DQ8 gene tests for celiac disease, if the blood tests are truly inconclusive this is a different way to get at some information-you'd know for sure if she's not a carrier, it's not celiacs)

    Some good sources for info:
    National Foundation for Celiac Awareness: www.celiaccentral.org
    www.celiac.com (message board, lots of info, gf food mall, and sub to the journal of gluten sensitivity)
     
  6. clanmcculloch

    clanmcculloch DIS Veteran

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    I disagree that the diagnosis matters. Both of my girls and I all test negative for every type of celiac test (all the blood ones and endoscopy). I even put DD14 back on gluten for a couple months to make sure we got accurate tests. What a waste. We all test negative. We all have autoimmune reactions to gluten. Celiac is only one type of gluten intollerance. If she's responding as drastically as she is to being gluten free then you have your diagnosis. Granted, we haven't bothered with the genetic or peptide tests but I don't see the need. We know we have to be gluten free. Cross contamination is as much of an issue for us as it is for "true celiacs" so again, diagnosis is irrelevant.

    As a non-celiac, I am severely vitamin B12, D, A and zinc deficient because of years of mis-diagnosis and therefore continuing to ingest gluten. Both of my girls are D deficient and one is borderline B12. Figuring out that you have to be gluten is free is absolutely imperative. The label for why is not IMO and in fact can be mis-leading because of the misconception that those who are gluten free but do not test positive for celiac can be more lax and not worry about cross contamination. By severely deficient, I'm talking about needing B12 shots weekly in order to keep neuropathies under control, needing 5000 UI daily of D to keep away muscle spasms and ending up with intermittent night blindness at one point from the A deficiency. Oh, and I was diagnosed with osteopenia in my early 30s because of (we assume) the D deficiency. This is what the gluten damage did to my intestines. Again, I don't have celiac. Both of my kids had growth issues as well. Again, not celiac.
     
  7. ILUVALASKA

    ILUVALASKA DIS Veteran

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    I went gluten free in JUly after a year of bloating, stomach ache, diahhrea, and cramps. Since July, I have lost 20 pounds and have no GI issues. I eat:

    eggs
    yogurt
    gluten free cereal or oatmeal
    salads
    chicken, beef,turkey fish
    fruit
    veggies
    nuts, popcorn
    rice, potato, and gluten free pasta
    For sweets I buy gluten free cookies or eat frozen yogurt

    I feel so much better! By the way, I have not been to the doctor or had tests. The test is what happens when I eat gluten! I feel terrible!
     
  8. disfan07

    disfan07 DIS Veteran

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    Personally, I would still advise to get some testing dne not for celiac or gluten intolerance but more for nutrient and vitamin deficiencies. If someone has celiac or any sensitivity to gluten they can have issues with malabsorption. So things like B12, folic acid, iron, vitamin D, etc can be abnormal even if the GI symptoms have disappeared.

    I think it's more important to know about hose things than getting an actual celiac diagnosis.
     
  9. clanmcculloch

    clanmcculloch DIS Veteran

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    What disfan07 said. Like I said above, I don't have celiac but I do have permanent damage to my intestines leading to many deficiencies. These deficiencies are impacting all sorts of areas of my health and need to be treated beyond just my dietary changes. I asked for my kids to be tested for these kinds of deficiencies as well and I'm glad that I did because both are deficient in D and one is deficient in B12 and thanks to testing they can be properly treated in addition to their dietary changes.
     
  10. ILUVALASKA

    ILUVALASKA DIS Veteran

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    Hi Disfan-

    Because I am in treatment for thyroid, I do have a complete bloodwork done twice a year. She checks everything- D, Calcium, B12, etc. But you are right-those things should be checked.
     
  11. disfan07

    disfan07 DIS Veteran

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    :thumbsup2 sounds like you are on top of it. It sjust something I always mention becasue I am B12 deficient but it took two years for anyone to check and I suffered some permanent damage in the process.

    I dont have gluten sensitivity (going GF hasnt helped my GI symptoms at all....or my B12 absorption) but its because of other various issues
     
  12. scottmel

    scottmel <font color=darkorchid>Does my logic in my origina

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    You guys are the best! I am the original poster and my head is swimming!!

    Ok after the round of testing that DID look for Celiacs - which came back negative so I thought no more of it. However the blood work was the CBC panel, Hemotology panel and Immunolgy small panel. Ca was measured at 9.7 - is this calcium I think? No mention of B6 or B12 or Iron so that is a very interesting thought to have those looked at.

    I hesitate to have her scoped at this point b/c not sure what it would gain me. If then felt her celiacs (spelling?) test was negative I am of the thought process she does not have that but COULD have a gluten sensitivity which is being proved correct by having no gluten and thus feeling better.

    What are my next steps:

    1. Iron, B12, B6 tested - can do that
    2. Do you agree to NOT scope b/c what will be gained by scoping?
    3. Is it "dangerous" to not have gluten in your diet?
    4. Keep her gluten free for ---- how long? Do I slowly introduce a little gluten back to see how she reacts? I guess I am thinking and believe me I am no doctor, that if you don't read positive for anything on this small panel then you don't have celics therefore your gluten threshold isn't over the top
    5. Allegy testing - would this show wheat? If so why go thru the celiacs testing etc. wouldn't one just check for wheat allergy first?

    thank you!
     
  13. scottmel

    scottmel <font color=darkorchid>Does my logic in my origina

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    Thanks Kristen! Seems like my panel is almost a screeming. IgA 145 - that is all it says. Tissue Transglutaminase n 10.

    Then the rest seems for Immune autoimmune testing ABS, panel etc. Gee you can tell my medical degree is among the missing! LOL! The only numbers in red are Amylase and Lipase and Lymphs....
     
  14. scottmel

    scottmel <font color=darkorchid>Does my logic in my origina

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    Excellent advice. I don't think her tests show any of these so I will follow up with her PCP for sure.
     
  15. clanmcculloch

    clanmcculloch DIS Veteran

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    I hate the "range" for the tTg antibody test. In a person who doesn't react to gluten, why would you have ANY antibodies? I don't understand why it's only clinically significant at 17 (I think that's the lowest number for a celiac diagnosis). The purpose of doing the total IgA is because the tTg test is useless in somebody who is IgA deficient and the frequency of IgA deficiency is higher among celiacs than the general population so it's important to check.

    I wouldn't bother with the scope if she's improving with a gluten free diet. IMO it's only worthwhile putting her through that if she still has symptoms after 6 months gluten free at which time the purpose is to see if something else is going on (6 months is enough time for gluten damage to completely heal if that was the only problem and there isn't permanent damage like there is with some of us who went undiagnosed for over 30 years of our lives).

    I've also come back deficient in D, A and zinc in addition to the ones you've mentioned. I've also read the suggestion of vitamin K being checked.

    ETA: I just looked it up and according to the Mayo Clinic, 10 is positive. http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/82587
     
  16. scottmel

    scottmel <font color=darkorchid>Does my logic in my origina

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    Oh geez Trudy talk me down off the cliff over here. Ok so basically here is what I understand from you. That what she has on the tissue test is a weak positive. Does this change ever in life? Once your system calms down do these numbers adjust? Her overall IgA is 145 thus normal. So would you think keeping her gluten free would lowe the Tissue Transglutasminase number? Should the doctor have talked to me about any of this? Would a allergy test show an allergy to wheat?

    Can she outgrow this intolerance? you say the damage can be undone in 6 months. What damage? And how do you keep it from climbing? She is asian so no info on ancestory, etc but her childhood and still now she has SEVERE dry skin and use to have terrible itchy dermatitis rashes and chronic nosebleeds. Over the years this calmed down significantly.

    I can't thank you enough for your help.
     
  17. clanmcculloch

    clanmcculloch DIS Veteran

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    Yes the number will go down to zero when she's gluten free. That's because there's no need for the body to produce antibodies to something the body's not being exposed to. It's like when you've had strep and the bacteria is no longer in your system the strep antibodies will go away.

    Unfortunately, it's highly unlikely that she'll outgrow it. Fortunately, the world we live in today, unlike even 10 years ago, is relatively easy to live in gluten free. Once she's been symptom free (and I mean completely symptom free) for several months, you can try a gluten challenge and see how she reacts. Personally, since she had a 10 for the tTg, I think she needs to be gluten free for life because I do consider that to be diagnostic of celiac, but that's just me.

    Google Dermatitis Herpetiformus. It's a skin manifestation of celiac. I have a different skin manifestation of gluten intollerance that looks more like psoriasis but it's still gluten (and actually also I believe candida) related. Her dermatitis will likely improve once she's gluten free.

    By damage I'm referring to internal damage to the intestines. Think of it like injury to her small intestines from an assault by gluten. This damage is NOT permanent unless the problems have been going on for years. In your daughter's case I'd put money on the fact that once she's been gluten free for a while there will be no trace of this injury. Just remember that experiences like mine are because of doctors NOT recognizing gluten issues when young. It's taken 30 years to end up with permanent damage. Your daughter is young and will be fine.

    As far as doctors go, many, many, many do not consider any form of gluten intollerance other than high positive for celiac to be valid while others recognize that even when tests are negative there can still be problems with gluten while most are somewhere on the spectrum in between these stances. My kids' GI doctor is definitely in the camp of tests mean nothing if symptoms show that it makes a difference, but then again he specializes in autistic kids and has seen first hand the impact of non-traditional treatments in autistic kids (my 15yo is autistic). I really don't know what your doctor will think of concepts like "weak positive" or gluten free trials as being diagnostically significant. This is something only your doctor fill you in on. I'm just sharing my experience.
     
  18. KristenFNJ

    KristenFNJ Mouseketeer

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    That's great! 19 or less is negative :) I admit I didn't interpret the original post that the test results were difinitive-the 145 IgA number made me nervous!

    I do agree that with the solid negative blood test I might not persue celiac's any further. It is true that there is a range for "weak positive" from 20-100. The IgA test is great, but doesn't have 100% specifity and sensitivity, which means the body will produce the IgA antibody to gluten most of the time but not all the time, and there's a percentage chance that the presence of this antibody is not because of celiac's. They recommend the full panel rather than just IgA, because IgG antibody (also not 100% in either case) is less likely to be present as a result of gluten, but when it is present it's much more likely to be because of celiacs. The blood tests aren't perfect, but together they usually (not always) lead towards the right diagnosis. But since neither test is 100%, that's why the biopsy is the gold standard for diagnosis.

    In our personal experience, DH got sick before the blood test was available. He suffered for years and tried all the purple pills known to man. Until one day, our pediatrician ran the"new" celiac blood test on DS1 because he had stomach aches, was weak and wasn't growing... Bazinga! We're very grateful for the blood test! This was our first experience with celiac's and we did have the biopsy to confirm the positive diagnosis. Shorty thereafter, DH had a positive blood test and did not get the biopsy. Fast forward a couple of years, and DS2 became symptomatic, and we also opted not to have the biopsy after the positive blood test... if it looks like a duck, quacks like a duck, and the duck genes are in the family, then it's celiacs! lol

    On the flip side, one of my best friends became ill and decided to try going off gluten. She had such relief! She still wanted to get the celiac test done but put it off and stayed gluten free for over 6 months. When it came time for the test (which her docs felt was important as they were also trying to diagnose a thyroid disorder that's often associated with celiacs), she tried loading gluten for 2 weeks, made herself very sick, and her test was inconclusive. 2 years later, her daughter became ill, but her symptoms were much different, mostly having to do with moodiness and fatigue as opposed to effecting her growth and stomach issues... it took a long time to arrive at a diagnosis, which turned out to be full-on celiacs. If she had known she had celiac's and could have passed it on to her daughter, and if the pediatrician knew of the family history, they would have been looking for that and she could have been diagnosed much sooner and suffered so much less (they actually recommend all immediate family members get the blood test when a family member gets diagnosed). She really beats herself up over that. When I hear that someone might be experimenting with gluten free without ruling out celiac's first, I'm always nervous that they'll end up going through a similar agonizing situation and I try to share information that supports getting the testing out of the way. It's much easier to test first and move on, then to try gluten free and test later.

    In my opinion, the diagnosis does matter. Celiac literature supports this as well. The approach to the gluten free diet can be greatly effected by the perception of need. Some non-celiacs with gluten intolerance, like clanmcullogh, react as badly or worse. :( Many react less, some can tolerate cross contamination, some can even eat gluten occasionally without suffering ill effects. My concern about not having an accurate diagnosis is the perpeption that it's okay to experiment with gluten here and there and not be so vigilant about cross contamination. With an allergy or intolerance, trace ingestion or occasional cheating may be okay now or one may grow out of it in the future, but with celiacs it's never okay, for the rest of your life. With allergy or intolerance, the same type of intestinal damage (usually!) doesn't occur, so gluten might make you feel yucky, but won't give you anemia or osteoperosis from inconsistency or unknown cross contamination. Every bite or cheat could be causing you damage that could take years to repair, if reperable at all.

    Additionally, the genetic aspect does have significance. If the family history is known, then testing can be performed as soon as symptoms arise-if it's not known, symptoms are far reaching across several different systems in the body and can be misdiagnosed as a whole variety of different causes, and the delay of diagnosis can be agonizing and damaging. Personally, I also just think it's important to know if I'm carrying a gene that I could pass on to my child, so I could be proactive in catching the onset as soon as possible to prevent damage and suffering. Even just knowing what to look for in DS2, he was barely sick at all, we got his blood test the week his stool changed. DS1 was sick for about 8 months and dropped half way down the growth chart because we didn't know to look for it.

    This is not all to win votes :) there's no one-size fits all when it comes to health! This is only my point of view on things, and while I strive to learn from reputable sources, in the end the interpretation is still just my opinion, and I value the opinions of others as well. I just know that I've learned a lot by others sharing perspectives and seeing things from a different point of view. Especially when we started out with celiacs, overwhelmed is not even the word. I learned so much from people who were willing to share on the internet, and I still do. Like, I didn't know that non-celiac gluten intolerance could look SO much like celiacs! I've never heard of a case like yours and your family, clanmccullogh! It actually sounds like what you have is way worse than celiacs! I'm SO sorry you're so sick-that sucks! :( I wish there was an answer for you, it would drive me crazy not knowing what's causing such a severe autoimmune reaction. You're right though, the most important thing is knowing how to tackle it. I hope you're able to overcome all those defficiencies and feel healthier!!!
     
  19. crisi

    crisi DIS Veteran

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    I'll talk you down...

    It is completely possible to have tummy troubles triggered by gluten that are no big deal, except you cramp or run the the bathroom after pizza or get gassy. Sometimes people also get headaches, dry skin or joint issues, but none of these things are life threatening...which is none reason known if there is any intestional damage or nutritional deficiencies For these people, it's often sufficient to be "gluten light" rather than gluten free.

    Certainly, that shouldn't diminish the severity of the issue for others.

    Your task is to figure out, via either tests or trial and error, at what point on the spectrum your daughter falls. If her issues are severe, like a friend of mine, you'll be running a gluten free kitchen...no flour in the house, no wheat products, barley, rye, maybe oats. No soy sauce. You watch your salad dressings, blue cheese and spices (sometimes have gluten as a filler). You never assume sauces, gravy and soups weren't thickened with flour. You don't drink beer. Your diet moves towards fruit, vegetables and meats...away from a lot of packaged foods. You appreciate Creme brûlée for dessert. Your sandwiches are on gluten free bread or done as wraps. You watch cross contamination

    If she is like me, she doesn't need to worry about taking a bite of someone's dessert, but a whole piece of cake will be really uncomfortable. I never worry about blue cheese or soy sauce.

    The first is much more doable than you are thinking right now. The second is easy.
     
  20. KristenFNJ

    KristenFNJ Mouseketeer

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    Hey, sorry I missed the in-between posts with the mayo link! I have a feeling that there must be some sort of scale between the two but I'm not able to research it right now, this is what I use as a reference for IgA results. I'm very interested in the mayo page and want to learn more about it, thanks for the link! When DS1 was tested, his IgA tTG was 100... so think it must be a matter of a decimal point or something like that!

    http://www.arupconsult.com/Algorithms/CeliacDz.pdf

    Also meant to say, I have a friend who's allergic to gluten, (also negative for celiac), her allergy was confirmed through allergy testing (at which time she found out she's also allergic to milk, eggs, tomatos, and a few other things... fun times!). I don't know much about allergy testing, but I do remember that each allergen had a "ping" rating, I think the scale was from 1-5, with 5 being the most allergenic. A test like that could help narrow down if she has an intolerance for gluten in a typical allergy sense, and how severe the intolerance is for determining how strict you need to be with cross-contamination, etc...
     
  21. scottmel

    scottmel <font color=darkorchid>Does my logic in my origina

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    Thank you......It is so hard to figure where she falls. This all started at Kona in June...She was so sick after eating the bread, which she has eaten many years before....And spent the rest of the vacation really watching her stomach. Thought it was gall bladder etc. Ruled all that out. So now I just need to figure where she falls. thanks...
     

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