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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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    • Rogol72
      Help I’m cross contaminating myself,

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      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
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      Help I’m cross contaminating myself,

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      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
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      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
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