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Old 01-22-2013, 11:07 AM   #1
scottmel
Does my logic in my original question make sense
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DD14 gluten issue...I think. Any ideas?

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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Old 01-22-2013, 11:31 AM   #2
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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.
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Old 01-22-2013, 12:05 PM   #3
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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.
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Old 01-22-2013, 02:04 PM   #4
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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)
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Old 01-22-2013, 02:36 PM   #5
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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.
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Old 01-22-2013, 10:36 PM   #6
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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!
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Old 01-23-2013, 01:01 AM   #7
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Quote:
Originally Posted by ILUVALASKA View Post
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!
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.
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Old 01-23-2013, 11:19 AM   #8
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Originally Posted by KristenFNJ View Post
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)
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....
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Old 01-23-2013, 12:09 PM   #9
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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.c...rpretive/82587
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Old 01-23-2013, 01:30 PM   #10
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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.c...rpretive/82587
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.
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Old 01-23-2013, 02:27 PM   #11
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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.
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!!!
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Old 01-23-2013, 05:32 PM   #12
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[QUOTE=KristenFNJ;47284278]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.

So you are ok with an IgA of 145 for 14 year old? From my google attempts this appeared normal but then your comment about being nervous got me nevous!

Unfortunately there is no info on birth parents, etc. so clueless on anything of the nature there. I wrote off the moodiness to teen behavior but the double over stomach sick for DAYS on end (no throwing up just severe pains) that would go in spurts for days then disappear and come back for days etc. caught my attention...
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Old 01-24-2013, 12:07 PM   #13
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Hi there!

I am a celiac so I had to remove gluten from my diet, however DH was having similar issues with gas, bloating, diarrhea, etc with just overall discomfort. He tested negative for celiac (bloodwork and biopsy) but opted to try gluten free. He feels so much better and has no desire for gluten. Out GI doctor says that gluten serves no purpose to our bodies when there are great nutritional grains like quinoa and brown rice to supplement. I was severely vitamin d and b12 deficient as well as anemic but I take natural supplement everyday and they are bringing my
levels back up to normal.

If your daughter is feeling better and she takes her vitamins, I would stick with a gluten free diet. DH will have oats every once in a while and he is ok with that so maybe that can be something you reintroduce after a month or so.

Good luck!
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