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Waiting For Results

AandGsmomma

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AandGsmomma Apprentice
AandGsmomma
Posted

I had my 5 year old tested yesterday and now Im just waiting for results. Im more afraid of a false negative than a positive. I just hope what ever the result that its accurate. I dont want to find out in a year or five that she was celiac and I have been damaging her.

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GottaSki Mentor
GottaSki
Posted

This is why many of us suggest giving the strict removal of gluten a good three month trial after testing is complete.

I hope you receive clear testing results, but if not removing all gluten to monitor symptoms is the best next step to make sure your test results were accurate.

Children generally improve very quickly when gluten is the cause of their symptoms - whether it be Celiac Disease or Non-Celiac Gluten Intolerance.

Cara in Boston Enthusiast
Cara in Boston
Posted

Yes, I agree. Once testing is done, regardless of the results, try the diet (strict - don't cheat just because it is only a test) and see if the original symptoms resolve. Also, double check to make sure you got the complete panel done . . . sometimes a test is negative, but if you didn't get them all, there will always be a question.

Good luck. Waiting and not knowing is hard.

Cara

AandGsmomma Apprentice
AandGsmomma
Posted
  • Author

The dr office called and said it was negative but she didnt give me the numbers so Im going to go in and get a print out of the results.

megsybeth Enthusiast
megsybeth
Posted

AandGsmomma, what does your instinct say? I know that's not scientific but, not to be too snarky, a lot of doctors these days aren't too scientific either :huh: . I just say this because starting this summer I KNEW my son had (has) celiac and shortly thereafter I KNEW I had it too. I was right on both. But the first blood test on my son came back "negative" as well. My blood work came back strongly positive and his second round of blood work, with DGP, came back positive enough for me, combined with his genes and symptoms.

I don't know what your daughter's specific issues are but for me the big test of whether to go with the doctor is, if not celiac, what else? I've had celiac for thirty years and just been told it's nothing. But I wasn't ready to accept that my son going from 90th percentile to 5th percentile in height, having constant fatigue and early stages of anemia, weak and stained teeth and now constant diarrhea, is normal and "nothing". So I kept going with his GI who still believes he does not have it and just needs antacids (????) but got an appointment in to see a celiac specialist at the end of the month. He's off gluten and I believe he has celiac. Let's hope both our little ones get better soon.

AandGsmomma Apprentice
AandGsmomma
Posted
  • Author

Megsybeth, its interesting that you ask what my instinct says. I have felt like something was off with her for a while. Her growth is fine for now, but she has awful constipation. When she does go, its tan and sorry to be gross, but HUGE! She is very pail and has dark circles under her eyes. She complains of leg pain. The biggest issue is the sudden behavior change. She has always been a bit anxious but latley her anxiety has been a big problem as well as huge off the charts tantrums over nothing.

AandGsmomma Apprentice
AandGsmomma
Posted
  • Author

I also have come up negative on blood /endoscope but have esiohigitis and issues with vitamin deficiancy along with family history of celiac.

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megsybeth Enthusiast
megsybeth
Posted

I would definitely report back here with her numbers because there are people on the board who know the tests in and out and can link you to research. Also, maybe look at Peter Green's book? Since you both have gluten issues, I'd take both of you gluten free and see what happens, after the testing of course. You can search this site for celiac knowledgeable doctors and post to ask for recommendations in your area.

My son only had positive DGP IGA so his old GI still does not consider him to have celiac. Pathologist said biopsies were negative for celiac. But I have it, he has it. I would like the specialist I'm seeing in two weeks to confirm it but to me going gluten free is really nothing compared to watching your child suffer and not having anything to do.

Good luck! And check out the cookbook "Gloriously Gluten Free". So delicious I recommend it to non-celiac friends.

Cara in Boston Enthusiast
Cara in Boston
Posted

behavior change was our only symptom in my then 5 year old. First doctor did tests and said NOT celiac. By then, I had tested positive and just knew he was so we kept looking. Took him to a specialist who did endoscopy and found extensive damage. Trust your instincts.

Original "know-it-all" doctor said he didn't have it because he was not positive on the TTG IgA or the Gliadin IgA. He was positive on all the IgG tests, but that didn't seem to interest the doctor. His gene test also indicated a "low" probability. That, and the lack of "classic" symptoms led him to to the conclusion that he didn't have it. He was also very bossy and condescending, so we were happy to go elsewhere.

frieze Community Regular
frieze
Posted

behavior change was our only symptom in my then 5 year old. First doctor did tests and said NOT celiac. By then, I had tested positive and just knew he was so we kept looking. Took him to a specialist who did endoscopy and found extensive damage. Trust your instincts.

Original "know-it-all" doctor said he didn't have it because he was not positive on the TTG IgA or the Gliadin IgA. He was positive on all the IgG tests, but that didn't seem to interest the doctor. His gene test also indicated a "low" probability. That, and the lack of "classic" symptoms led him to to the conclusion that he didn't have it. He was also very bossy and condescending, so we were happy to go elsewhere.

cara, please make sure this doc's name is known in your local celiac community....

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    • knitty kitty
      My only proof

      By knitty kitty · Posted

      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
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      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
    • knitty kitty
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By knitty kitty · Posted

      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
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