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Old 01-23-2013, 02:58 PM   #16
clanmcculloch
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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.
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Old 01-23-2013, 03:27 PM   #17
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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, 04:15 PM   #18
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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 brle 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.
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Old 01-23-2013, 04:53 PM   #19
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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...
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Old 01-23-2013, 06:24 PM   #20
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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 brle 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.
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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Old 01-23-2013, 06:29 PM   #21
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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...
Love that flowchart! But it is confusing to me b/c my IgA shows 145 (DD14). How do you know how to intepret this? Surely 7.5 as you say is a decimal point missing or something?

At this point in the game, would you pursue anything else or just be gluten free and see how it goes?
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Old 01-23-2013, 06:32 PM   #22
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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 01-23-2013, 06:36 PM   #23
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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.

Why do you think that or why do charts seem to vary? From what I read 19 and up is Celiacs - why would 10 be unless I am just not interpreting my results correctly. I am so sorry for all you family has to go thru with this craziness and that it is so hard to pinpoint the issue.....I so appreciate the input!
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Old 01-24-2013, 09:28 AM   #24
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Kristen and I definitely agree on the importance of understanding heredity. This is true of any kind of health concern. My concern over saying that if it's celiac then you have to understand the genetic component is the potential for dismissing the potential when celiac tests are negative. Both of my girls are now gluten free with all negative tests yet definite health improvement from going gluten free. We tried it because of our knowledge of my issues. If one person in the family has a health issue, allergy, anything "out of the ordinary" then if any other family member starts showing issues then these known issues should be at the top of the list of potential problems to consider, including gluten issues regardless of celiac tests.

As to why I think she'll likely need to be gluten free for the rest of her life, it's just based on everything I've seen since I began this journey into intollerances and other health issues. But, I did also say that it doesn't hurt to try a challenge once she's symptom free since she didn't have high antibodies. Once she's symptom free you'll be in a better position to identify symptoms that show up. If she does react to a piece of bread once she's symptom free then you can do another challenge once she's recovered from that (I'd give it time as in at least a month) and then try something with only a small amount of gluten to see if maybe she can tollerate trace amounts.

Unfortunately, far too many people end up finding out after far too much suffering that despite tests below the "standard" diagnostic level for celiac that they in fact do need to go gluten free and stay that way. There's still a lot that's not understood by the medical community when it comes to gluten.
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Old 01-24-2013, 10:07 AM   #25
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Just my 2 cents. My DD, 10 was just diagnosed with celiac on Monday after an endoscopy. The visual and biopsy were both positive.

She never had any problems that we knew about until she started with horrible stomach pains while on antibiotics for bronchitis in November. We all thought they messed up her gut somehow and she was being treated as such. We ended up in the ER. She had a CT scan which showed nothing. We finally got to see the GI doc on the 8th. Bloodwork was positive for celiac. We debated as to whether or not to put her through the endoscopy since she had already been through so much. She has been in pain 24/7. It is a 9 out of 10 on the pain scale. We decided we needed peace of mind as to what was going on and that there wasn't something else besides the CD. I am glad we did. I didn't want her to suffer in the future if she was going to need the official diagnosis for some reason. After all, she is only 10 and they could come up with something some day to fix the problem.

We went gluten free on Monday after the endoscopy. It was very difficult to keep her eating gluten for that week prior. That said, she is still in as much pain as she was. We are hoping it starts to ease up soon now that she is eating GF.
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Old 01-24-2013, 10:28 AM   #26
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Denine, if she's still suffering just as much since going gluten free, I'd highly recommend that you go dairy free as well, at least for now. When the body is suffering and struggling to cope with physical problems, one of the first things it does in order to manage the energy needs of that struggle is to shut off production of lactase which is the enzyme required to digest lactose (milk sugar). This is extremely common for people with celiac when first diagnosed. As the intestinal damage heals once gluten free, for many the production of lactase resumes. But, in the mean time, consumption of lactose causes physical discomfort and inhibits/slows down healing. In addition, many with celiac also turn out to be intollerance to casein which is the protein found in milk. Basically, if you eliminate milk for now, once she's symptom free you can easily do a milk challenge (give her a glass of milk) to see if she can tollerate it at that point. Many people with celiac find that eliminating milk at first helps and that they can then resume consuming it later. Just something to consider.

One more thing to consider. I'm not sure if this applies to you or not, but many people when going through GI distress end up consuming a lot of soup as it's an easy to digest and soothing food for many people. Lots of soups contain gluten. I just want to make sure you're not falling into that trap.

ETA: It's only been a few days. For some, symptoms may take a bit longer to ease up. I know that doesn't make you feel any better but hopefully she'll start improving quickly.
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Old 01-24-2013, 12:16 PM   #27
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Just my 2 cents. My DD, 10 was just diagnosed with celiac on Monday after an endoscopy. The visual and biopsy were both positive.

She never had any problems that we knew about until she started with horrible stomach pains while on antibiotics for bronchitis in November. We all thought they messed up her gut somehow and she was being treated as such. We ended up in the ER. She had a CT scan which showed nothing. We finally got to see the GI doc on the 8th. Bloodwork was positive for celiac. We debated as to whether or not to put her through the endoscopy since she had already been through so much. She has been in pain 24/7. It is a 9 out of 10 on the pain scale. We decided we needed peace of mind as to what was going on and that there wasn't something else besides the CD. I am glad we did. I didn't want her to suffer in the future if she was going to need the official diagnosis for some reason. After all, she is only 10 and they could come up with something some day to fix the problem.

We went gluten free on Monday after the endoscopy. It was very difficult to keep her eating gluten for that week prior. That said, she is still in as much pain as she was. We are hoping it starts to ease up soon now that she is eating GF.
My GI said that it could take up to a few months for some people to feel better after going gluten free. I had to gluten free because of a wheat allergy back in June and even though all of tests came back negative, my GI and allergist thought it might help my GI symptoms anyway and that maybe the tests were wrong. He said we needed to wait 3-4 months to really confirm if it was helping or not. After 4 months of being gluten free and still not feeling better (and actually worse) he confirmed that my GI problems were not gluten related.

So unfortunately, it could take some time before she begins to feel completely better. Sme people feel better faster than others. But no two people are the same. But hopefully she is one of those who will feel better very soon!
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Old 01-24-2013, 12:51 PM   #28
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My dd is is gluten free .but at first we struggled a results were negative till i jumped up and down and pointed out she is IGa and Igg deficient so course blood work wont show .

but lots of Drs do not make the connection between the two
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Old 01-24-2013, 12:54 PM   #29
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Originally Posted by clanmcculloch View Post
Denine, if she's still suffering just as much since going gluten free, I'd highly recommend that you go dairy free as well, at least for now. When the body is suffering and struggling to cope with physical problems, one of the first things it does in order to manage the energy needs of that struggle is to shut off production of lactase which is the enzyme required to digest lactose (milk sugar). This is extremely common for people with celiac when first diagnosed. As the intestinal damage heals once gluten free, for many the production of lactase resumes. But, in the mean time, consumption of lactose causes physical discomfort and inhibits/slows down healing. In addition, many with celiac also turn out to be intollerance to casein which is the protein found in milk. Basically, if you eliminate milk for now, once she's symptom free you can easily do a milk challenge (give her a glass of milk) to see if she can tollerate it at that point. Many people with celiac find that eliminating milk at first helps and that they can then resume consuming it later. Just something to consider.

One more thing to consider. I'm not sure if this applies to you or not, but many people when going through GI distress end up consuming a lot of soup as it's an easy to digest and soothing food for many people. Lots of soups contain gluten. I just want to make sure you're not falling into that trap.

ETA: It's only been a few days. For some, symptoms may take a bit longer to ease up. I know that doesn't make you feel any better but hopefully she'll start improving quickly.
Thanks. She is taking lactaid with all dairy. She loves milk, so I hate to take it away. If there is no improvement in a couple more days, I will remove it completely. The only soup I serve is homemade. Todays dinner is grilled chicken, rice and green beans.

I keep telling myself it has only been 3 days on the diet. But after 8 weeks of pain, I want her better yesterday! I am trying to be patient though.

We are still waiting for the egg, soy and milk allergy tests to come back. Hopefully those will be in soon.
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Old 01-24-2013, 12:57 PM   #30
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Quote:
Originally Posted by disfan07 View Post
My GI said that it could take up to a few months for some people to feel better after going gluten free. I had to gluten free because of a wheat allergy back in June and even though all of tests came back negative, my GI and allergist thought it might help my GI symptoms anyway and that maybe the tests were wrong. He said we needed to wait 3-4 months to really confirm if it was helping or not. After 4 months of being gluten free and still not feeling better (and actually worse) he confirmed that my GI problems were not gluten related.

So unfortunately, it could take some time before she begins to feel completely better. Sme people feel better faster than others. But no two people are the same. But hopefully she is one of those who will feel better very soon!
I would be happy at this point if her pain just eased up a bit. Her doctor felt that she should start feeling better soon. Whose definition? I know it has only been a few days and info I have seen says 1-2 weeks. I was hoping for best case scenario.
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