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3yo Negative Bloodwork, But Intense Rash Cleared Up Since Going gluten-free?

kmama

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kmama Newbie
kmama
Posted

I've been suspicious about wheat bothering my 3 yo for about 6 months. His behavior has been strange after eating wheat and he has had persistent red cheeks, red splotches on inside of elbows and knees. All this cleared up when I took him off gluten. Then, I did a challenge to get him officially tested for celiac. GI doctor said he needs to be on for at least 3 weeks. After one week back on gluten he broke out in an intensely itchy rash. It started on his neck & ear, spread to face, torso, legs and arms and lower back. It was so miserable for him. Ped and dermatologist said it wasn't anything 'typical' looking. Dermatologist said it looked like it could be dermatitis herpetiformis, did a skin biopsy which I'm still waiting to hear results from.

That day after seeing the dermatologist I told the GI doctor I can't keep feeding him gluten and watching him suffer, so he told me to go ahead and get the blood drawn for the celiac panel. He'd been on gluten for 15 days, then off for 36 hours when he had the blood drawn. I just heard from the GI doctor that the results were negative for celiac. It was sooo obvious that the rash was related to gluten. It started clearing up as soon as he was off it. He's been gluten-free for a week now and the rash is mostly gone except for a few spots on torso and arm.

I'm wondering if I should trust those blood test results or not. Any advice? I'm not going to put him back on gluten b/c I'm too nervous about the rash coming back. I am just frustrated to not have an answer for definitely what was causing the rash.

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lizajane Rookie
lizajane
Posted

honestly, it sounds like you already know what is causing the rash. if he feels better gluten free, the stay gluten free. you don't need a diagnosis to eat a certain way. if he feels good that way, then it is best for him regardless of test results.

weluvgators Explorer
weluvgators
Posted
I'm wondering if I should trust those blood test results or not. Any advice? I'm not going to put him back on gluten b/c I'm too nervous about the rash coming back. I am just frustrated to not have an answer for definitely what was causing the rash.

It will be interesting to find out what the biopsy shows! I have three symptomatic children. My middle child was our first alert to the issues we have with gluten, as she has never tolerated any. I did not understand the extent of our sensitivity when we started our gluten free journey, but we have never in her life been able to do a gluten challenge.

I recently went to see Dr. Fasano speak, and we were given a chance to ask him questions after his talk. I explained our symptoms and extreme measures for staying gluten free, and he agreed that a symptomatic child should not be on gluten.

There is SO MUCH going on for these children during these critical development years. Gluten can do irreparable harm to those who are celiac and/or gluten intolerant. We remain gluten free and do not see that changing in our future.

You may still get your definitive answer to what is causing the rash, but I don't know that it makes the gluten free diet any easier.

swalker Newbie
swalker
Posted

His body told you it doesn't do well with gluten. Your challenge was just as definate a diagnosis as a blood test would have been.

ang1e0251 Contributor
ang1e0251
Posted

Just know there are many false negatives in the bloodwork of young children. I wouldn't take those test results seriuosly. When he is older, if you choose to go through a gluten challenge, you can have him re-tested but even then, blood results are iffy.

As the other posters have already pointed out, you're reading his body signs that gluten is harmful to him. THat's all that's needed. Your Mom instincts are better than his test results.

GottaSki Mentor
GottaSki
Posted

Ditto....trust your instinct. Blood tests for Celiac Disease rarely diagnosis, only indicate possibility of Celiac - an endoscopy is needed for confirmation. If you already know there is an adverse reaction to gluten you don't need to know anything else with a 3 year old. In the future if a diagnosis is needed...there are ways to accomplish this and who knows there may be a better way than endoscopy in the coming years.

Good Luck and great detective work Mom!

OptimisticMom42 Apprentice
OptimisticMom42
Posted

Hello Kmama,

My son's blood test also came back negative. His symptoms are also pretty obvious. He's 18 yrs old and wants to be a normal guy so he'll tell you he doesn't have celiacs. But given the choice between cheerios (and D) or rice chex, he'll eat the rice chex. He also eats my gluten free cookies and drinks my rice milk :huh:

Most of the food in our house is now gluten, dairy and soy free and my kids have been very good about the changes. Last night we made gluten free spag and Fruity Pebbles (not rice chrispy) treats. That's not a huge departure from what our meals looked like before we found that I have celiacs and that at least one of my children probably does.

You know Kmama before you found out about gluten you made other choices for your child. You decided that to much candy was bad for his teeth, that he needed to eat his fruits and vegetables and that maybe ramen noodles were to high in sodium. This is no different. You are the MOM. The dr is only the dr. Offering your child healthy alternatives to processed foods is a good thing!

Take care,

OptimisticMom42

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      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
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      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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