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KristenPK

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KristenPK Rookie
KristenPK
Posted

We very recently discovered that our daughter has an intolerance to gluten. She tested negative for Celiac, however. I have several questions.... First, do I push the issue and have another/different test done? It's possible for her to have a sensitivity to gluten without being Celiac, right???

We're starting her on a gluten free diet, and it's going pretty well. Do I need to seek help from anyone--GI, nutritionist, etc???

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Lisa Mentor
Lisa
Posted
We very recently discovered that our daughter has an intolerance to gluten. She tested negative for Celiac, however. I have several questions.... First, do I push the issue and have another/different test done? It's possible for her to have a sensitivity to gluten without being Celiac, right???

We're starting her on a gluten free diet, and it's going pretty well. Do I need to seek help from anyone--GI, nutritionist, etc???

I don't know how old your daughter is, but general, children under the age of five do not test accurately. She may gluten intolerant without Celiac. A positive dietary response is a good indicator.

Remember, the tendency for Celiac is inherited. You might consider having you and your husband check.

ang1e0251 Contributor
ang1e0251
Posted

Her response to the diet is the key for you. You of course can do more testing but she must be actively eating gluten for more testing. I don't even want to put myself through that. IMO, The fact that she is doing well is enough, I just don't think it's important to know the difference between sensitive & Celiacs, either way she is sick when she eats it. Don't let her be sick.

Maybe someone with more knowledge can give you a reason for further testing. I'm glad for you that your daughter is better.

eeyore Collaborator
eeyore
Posted

People are able to be gluten intolerant without having celiac -I am one of them, being gluten-senstitive.

KristenPK Rookie
KristenPK
Posted
  • Author
I don't know how old your daughter is, but general, children under the age of five do not test accurately. She may gluten intolerant without Celiac. A positive dietary response is a good indicator.

Remember, the tendency for Celiac is inherited. You might consider having you and your husband check.

Interesting...she's only four years old. I'll talk to my husband about possibly testing ourselves as well. I was pretty sure that she could be gluten intolerant without being Celiac, but my doctor didn't seem to agree with me. I think I may have to look elsewhere for help to find someone with more knowledge on the subject.

Thanks for your help!

purple Community Regular
purple
Posted
People are able to be gluten intolerant without having celiac -I am one of them, being gluten-senstitive.

Ditto for my dd. As I look back over her 20 years, I can see little symptoms here and there as she was growing up. She has been gluten-free for 7-8 months (about 95-98 percent of the time). Her PMS has gotten back to normal. She still doesn't always sleep well at night and still has an allergy to dust/pets when she visits our house. She never gets bloated anymore. Never C or D or tummy troubles.

She has not had the Celiac tests but gluten-free diet has cleared up many little things and the extreme PMS. We don't have insurance nor $ for the doctor testing, so as long as I watch/listen to her closely and ask questions then I am comfortable with the gluten-free diet. She also drinks a little soy milk but not much dairy milk. Ice cream and cheese don't bother her. I cook and freeze gluten-free food for her so I pretty much know what she eats and she knows what to eat at potlucks/restaurants. She has had blood in her stools several times so we watch for that.

I watch my other dd closely and my dh too. We eat mostly gluten-free. Its beneficial to all of us b/c of the lack of chemicals/preservatives. I know what is in the food we eat.

fatherof4yearold Rookie
fatherof4yearold
Posted
We very recently discovered that our daughter has an intolerance to gluten. She tested negative for Celiac, however. I have several questions.... First, do I push the issue and have another/different test done? It's possible for her to have a sensitivity to gluten without being Celiac, right???

We're starting her on a gluten free diet, and it's going pretty well. Do I need to seek help from anyone--GI, nutritionist, etc???

you will find one of the frustrating things is you will be told the only way to know if you have celiac is quit eating gluten and see how you feel which is brutal when dealing with a child. My son had a biopsy of his intestine when he was four after 7 months of trying to find out what was wrong. The biopsy showed damage so they said he had celiac, his blood test came back higher then usual so we just went forward with a gluten-free diet. Not sure 4 years later if he has it or not (i don't know how to change my screen name) he is 8 now still gluten-free and gaining weight and healthy as can be. We have never gone back for another biopsy which you are supposed to do but he is doing so well we do not wan to go through the drama of a medical procedure again,

We went to several doctors and ending up at DuPonts childrens hospital and then went to CHOP's gastro who did the biopsy. When we were told we went to a nutristionist who specialized in celiacs. I think you have to do your due diligence and keep searching for answers. The nutrionist was the most helpful you might want to find one ho specializes in celiac. My son does not know life with gluten and so day he will have to discover for himself what he can eat and can't right now he is doing great. Thats my story hope it helps

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    • knitty kitty
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      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
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    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      Contact them.
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