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Amber52377

Newly Diagnosed Wheat/gluten Allergy

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My youngest son was diagnosed w/a gluten/wheat allergy this past Friday (May 13th) after doing a 2 mo elimination diet. We've been instructed to continue w/the gluten free diet, restrict dairy intake & keep fruits/fruit juice to no more than 1 serving per day. Is there anything else we should be looking at? Doing?

Some background:

April 2009 @ 1yr appt- told pedi about horrific chronic diarrhea, not sleeping through the night, irritability, waking up SCREAMING & throwing himself around in pain, just miserable in general. Was referred to pedi GI

May 2009- saw pedi GI who ran all kinds of blood work, including the celiac panel at my request b/c of an extensive family history of AI- myself included. Blood work for celiac was negative, dx w/moderate reflux & was put on 30mg of prevacid. Also discovered his IgG, IgA, neutrophils, lymphocytes & eosinophils were all abnormally low. Pedi referred us to an immunologist/allergist. Still having horrific diarrhea issues.

July 2009- saw immunologist who dx Transient Hypogammaglobulinemia of Infancy & Selective IgA Deficiency- explained chronic diarrhea was a symptom of both immunodeficiencies.

Sept 2009- Upper EGD w/10 site biopsy was done. Negative for celiac, positive for GERD.

2010- back & forth between both Drs trying to figure things out. Immune system numbers improved but diarrhea & night waking/irritability still the same. Both GI & immuno suggested it was a matter of Evan "outgrowing" his problems.

Mar 2011- Fed up Momma DEMANDED food allergy testing. Out of the 16 foods tested in a skin prick test- , egg yolk, whites & wheat were the most positive w/ 5x5 wheals & 15x15 flares followed by soybean- 5x5 wheal & 10x10 flare. Immunologist put Evan on a dairy, egg & gluten/wheat free elimination diet for a month with instructions to reintroduce foods one at a time over the course of the next month.

Here's where I start to have questions on things. Evan showed minor improvement after being on the elimination diet- stools 1x daily, slightly more formed & he started sleeping through the night. Over the next 3 wks, we added all three foods back seemingly w/o incident though we started noticing diapers weren't as formed & he was waking during the night again- just not every night. Then starting May 4th, the diarrhea was back full force- NASTY smelling, very runny, greenish w/black sandy flecks that were difficult to get off w/o a bath. Waking every.single.night. At our follow up on the 13th, the immunologist dx him with a wheat/gluten allergy based on his symptoms & the fact we saw an improvement during his elimination diet.

Is the immunologist right? Is it the wheat/gluten? I asked about testing other things & he said he didn't think that was it b/c if it were something else, we never would've seen an improvement, no matter how small it was. He also told me that blood work didn't need to be done since a diet reaction was the "gold standard" for diagnosis despite all kinds of negative tests.

Is he correct? Should I seek a 2nd opinion? I must mention I'm not a big fan of the guy- he has a slick, used car salesman personna that drives me nuts.

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Elimination diets, if done well, and challenges are the only really reliable test. They're harder to accept sometimes, as the culture of medicine these days wants us to have a test that definitely says YES. Reactions do build up over time for some-- pain starts earlier for me, but fat malabsorption is at it's worst at 2-5 days after exposure.

You could push for another round of testing for celiac, but the results of the diet should outrank any bloodwork and the poor kid is deficient in both IgG and IgA, so neither test would be incredibly reliable. A pill cam could be done, but that's less effective than endo w/ biopsies for most people.

Be sure you get a written medical statement that he is on a that diet for future use in the school system and such. Genetic testing could be another follow-up, but that only means it's possible. If you or his father are diagnosed (you should be screened), I'd say he definitely has it. You may also want an epi-pen and training on how/when to use it.

So, that's not necessarily a clearly definitive answer, but you should stick faithfully to the diet for longer and see how he does. He'll probably be much better, and then you can tweak the diet more if you think there are other issues (dairy, for example). He might outgrow the egg, but I think gluten tends to be permament..? Celiac is forever.

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The problem with elimination diets comes when you have more than one allergy and particularly many allergies. Also if you have IgG allergies such as my mom, daughter and I have, the symptoms come delayed so you don't necessarily relate the symptoms to the offending food that you ate. We had our allergies diagnosed by a naturopath but the ones who do this testing can be hard to come by.

Although my daughter did have stool troubles, she never had the exact problems that you describe so it leads me to believe that it is indeed celiac or perhaps a combination of that and an allergy.

If I were you, I would try to find another Dr.

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Small children are very hard to diagnose with celiac - they seldom show positive. Their reactions to the foods is much more reliable.

If I were you I would eliminate gluten entirely - forever. Keep him off the dairy and eggs for a month and then introduce one of them for a month and see how he does (I would do egg because if he is celiac he will have difficulty with dairy). If he handles the egg okay, then try him with hard cheese and/or yogurt - this would be casein only, not lactose, and see how he handles that. If he does okay with those it would indicate it is just lactose he is intolerant to and that should go away once he heals from the gluten. You could try him again on lactose in about six months. There are lots of milk substitutes - rice (but not Rice Dream), almond, hemp. There is coconut and hemp ice cream available from Whole Foods. You can get egg substitute for baking, or use some applesauce.

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Sounds awful! Such a shame its gone on so long as well. Must be exhausting in fact! You cna order a test online for celiac disease, its a prick test, so not a full on blood test, it tests specifically for celiac disease, maybe try that? And then ask for a biopsy. It strue celiac is for life and just finding out can make you breathe a sigh of relief!

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