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Is She Gluten Sensitive Now That She's gluten-free?

Grace'smom

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Grace'smom Explorer
Grace'smom
Posted

Hi all,

I've shared before that my 6 yo daughter Grace was asymptomatic of celiac right through the positive biopsy. She did have thyroid disease as a result of undiagnosed celiac, but no stomachaches or headaches, etc. I mentioned to the GI this summer that about 8 wks into the gluten free diet, if Grace had accidentally ingested gluten (which in the beginning she definitely did) she would complain of a stomach ache. I asked the doctor if this were common and she said no. I'm confused. I know for a fact that one time, Grace ate a grilled chicken patty that I'd mistakenly assumed was wheat free. After she complained of terrible stomach pains after eating it, I went back and was horrified to find that the seasoning on the chicken DID contain wheat. Beyond that, I posted Labor Day wkend that we believe she was accidentally glutened in oral surgery w/some of the medication she was given, despite our best efforts to inform the surgeon of her condition. Again, vomited for over 24 hrs. I am still trying to compile the list of meds to bring to her next GI appt and upoming physical. This past week in school, I was concerned becz she was complaining of mild stomach aches. As it turned out, she picked up a virus w/a fever so I could rule out glutening. My question is: the GI seemed to think she would not show signs of glutening NOW if she hadn't THEN. I'm perplexed, because it seems obvious to me that once she went gluten free, when her body receives it now she's sensitive to the glutening. Any one have any thoughts on this? I don't want to continue wondering if she's been glutened if it is truly physically impossible for her to now experience physical side effects, and all of the above have been wild coiincidences. Thank you, Emily

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dilettantesteph Collaborator
dilettantesteph
Posted

I know my dad who is around 80 is poor comparison for a young child, but he experienced the same thing. He was pretty much symptom free. Now he really feels it if he gets glutened. I think that he had just gotten used to his symptoms after so many years. His glutening symptoms are also worse than what he was living with before. That goes for me too, though I was super symptomatic before.

ravenwoodglass Mentor
ravenwoodglass
Posted

What your seeing is not unusual. It is not uncommon for folks who seemed to be asymptomatic at diagnosis to have reactions after gluten is taken out of the diet. Once the antibody reaction from gluten is gone from everyday life when she injests gluten the antibodies will spike as her system is trying to protect her from the substance that it finds poisonous.

Grace'smom Explorer
Grace'smom
Posted
  • Author

Thank you both...it makes sense to me, and I was surprised that her doctor looked at me funny when I made that observation. Makes perfect sense; I'll keep paying attn. to these "episodes" to consider the possibility of accidental glutening.

Em

cassP Contributor
cassP
Posted

my reactions have intensified since going gluten free.

T.H. Community Regular
T.H.
Posted

That is exactly my daughter's reaction - stomach pains now with gluten, no stomach pains before going gluten free. And as both my daughter and I are celiac, we've both reacted to the same thing a couple times, so it's a bit hard to swallow that both of us are 'not' reacting to the same thing at the same time, LOL.

Also my father and I also both have specific reactions now to gluten where we didn't before.

Afraid the doctor is just not real aware, sigh.

Thank you both...it makes sense to me, and I was surprised that her doctor looked at me funny when I made that observation. Makes perfect sense; I'll keep paying attn. to these "episodes" to consider the possibility of accidental glutening.

Em

AndrewNYC Explorer
AndrewNYC
Posted

She may have had a lot of issues when she used to eat gluten but wasn't aware that they were any cause for alarm. Now that she had felt better for awhile she understands how she is supposed to feel when she is well.

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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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      Anti-endomysial Antibody (EMA) Testing

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