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All The Biopsies Were Negative ....still Going Gluten Free

carecare

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carecare Enthusiast
carecare
Posted

I guess I knew we'd still do the gluten free house no matter what. I know each of us feels better gluten free so we'll just move on. My 12 yr old's esophagus was slightly irritated...but I don't think the nurse mentioned the dr wanting to do anything for that. My 10 yr old looked clear but because he has so many stomach complaints the dr prescribed an antacid. My 19 yr old daughter had pretty extensive Eosinophilic esophagitis. So the biopsy confirmed what the irritation the dr saw was. She also has a hiatal hernia which I'm sure doesn't help that either. The EE makes us realize what she has had problems with over the past 7-8 yrs with reactions to things. Her chest used to hurt so extremely bad I'd almost be bringing her to the ER.

So the plan with her is to eat gluten free while home on Winter break from her college. Get her healthy and then hope that she can make some good choices with her food when she goes back. I think I will call up the college and have her meet with the nutrionist there...as I think they did have someone available. She's been very fatigued so my worry is she'll get herself feeling good again and because she doesn't have that celiac diagnosis the college won't do anything to help her with her eating plan.

Ah..I know nobody wants the diagnosis of celiac...but it would explain so much. My 12 yr old son's blood work was positive and his muscle pain went away gluten free so something must be going on. My husband has to avoid gluten or he gets severely ill.

The dr recommended genetic testing now. Is there any difference between getting the genetic blood test vs the swab of the mouth. I think our insurance pays 50% for a genetic blood test which would put us having to pay about $550...vs doing it on our own I think it was $300 for the saliva test through promitheus labs.

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frieze Community Regular
frieze
Posted

what are you hoping to learn? what would change in your approach? may well be a waste of money.

researchmomma Contributor
researchmomma
Posted

I guess I knew we'd still do the gluten free house no matter what. I know each of us feels better gluten free so we'll just move on. My 12 yr old's esophagus was slightly irritated...but I don't think the nurse mentioned the dr wanting to do anything for that. My 10 yr old looked clear but because he has so many stomach complaints the dr prescribed an antacid. My 19 yr old daughter had pretty extensive Eosinophilic esophagitis. So the biopsy confirmed what the irritation the dr saw was. She also has a hiatal hernia which I'm sure doesn't help that either. The EE makes us realize what she has had problems with over the past 7-8 yrs with reactions to things. Her chest used to hurt so extremely bad I'd almost be bringing her to the ER.

So the plan with her is to eat gluten free while home on Winter break from her college. Get her healthy and then hope that she can make some good choices with her food when she goes back. I think I will call up the college and have her meet with the nutrionist there...as I think they did have someone available. She's been very fatigued so my worry is she'll get herself feeling good again and because she doesn't have that celiac diagnosis the college won't do anything to help her with her eating plan.

Ah..I know nobody wants the diagnosis of celiac...but it would explain so much. My 12 yr old son's blood work was positive and his muscle pain went away gluten free so something must be going on. My husband has to avoid gluten or he gets severely ill.

The dr recommended genetic testing now. Is there any difference between getting the genetic blood test vs the swab of the mouth. I think our insurance pays 50% for a genetic blood test which would put us having to pay about $550...vs doing it on our own I think it was $300 for the saliva test through promitheus labs.

Your daughter is old enough to make good choices, however, the school cafeteria may be willing to help her with what is or is not gluten free. She can't be the only person there eating gluten-free. Check that out.

I am sorry that you don't have the answers that you seek, however, I would just go gluten-free and see how everyone does. It is worth it since it is not a prescription and easy to reverse if you don't see improvement. I know how you feel though. I am right there with you.

eatmeat4good Enthusiast
eatmeat4good
Posted

YOur daughter should be very careful about eating in the cafeteria at all even if they have gluten free choices. The fact that they use flour in the kitchen means gluten flies all over the place. You might see if she can get accomodations to be able to cook her own food. But there are some nightmare posts on here about people trying to get colleges to accomodate gluten free students. It is frightening. I hope the nutritionist is helpful though. And some people care enough to help and learn so hopefully that will be the case for her. Just remind her to watch her reactions and suspect contamination. One kid in college posted his only option was the cafeteria and he kept getting contaminated but couldn't do anything about it because the food itself was basically gluten free so the cooks and the staff were unsupportive. I hope things change drastically soon.

I don't know anything about the testing as we opted against it and just went gluten free and have never been more healthy.

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    • knitty kitty
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      @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.
    • rei.b
      High DGP-A with normal IGA

      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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