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No Official Diagnosis, But....

albauer94

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albauer94 Apprentice
albauer94
Posted

I have had problems most of my life that I now know are symptoms of celiac (IBS, GERD, mouth ulcers, headaches, mystery rashes, infertility, miscarriages, I could keep going but I'll stop).  Anyhow in February I saw a chiropractor/nutritionist because I was totally exhausted and just all around felt like crap.  He suspected it was gut related and ran a organic acid urine test and a celiac HLA DQ screen to check to see if I had the markers because my 13 year old nephew has celiac.  The test came back that I had the DQ8 allele.  He recommended that I start start a gluten free diet at the beginning of March to see if it helps any.  

 

March came and went and I felt much better.  Stomach issues getting better, no brain fog, and I wasn't nearly as exhausted as before.  On April 1 blood test results for my 3 year old son came back positive for celiac.  I resumed a gluten filled diet and called my PCP and requested celiac testing.  Test results were negative but the some of the tests they used were outdated and they only ran IgA, not IgG and didn't test total IgA so I'm still not convinced.  A couple weeks later I called my GI doctor (who I should have called to being with) and told them about a stronger family history (son with positive blood (now blood and biopsy), 1 brother with DH but no biopsy, 1 that can't eat gluten without getting sick but never tested, 1 nephew confirmed celiac-we knew about him for 2 years, and 1 nephew with positive blood test) than a year ago when I had a scope to look for an ulcer or any other reasons for constant hunger feelings and heartburn.  He looked for evidence of flattened villi but didn't see anything but didn't do a biopsy.  

 

Now with the stronger family history, DQ8 gene and positive response to a gluten free diet he said that he would do another scope to do a biopsy but after discussing it with my husband I decided against it, but now I wonder if I have made the right decision or if I should just assume I probably do have it and I'm going gluten free either way so it doesn't matter anyhow.  I have been gluten free for two weeks now after eating anything and everything in April and being sick most of the month.  I don't really want to resume a gluten filled diet just for the sake of a test that wont' make a difference either way.

 

So I guess my question is, are there any benefits to testing as an adult?  Other than knowing you need to stay on a strict diet.  I  don't need a doctor to tell me what I already know. I accidentally glutened myself yesterday eating a chef salad.  Lesson learned, lunch meat isn't always gluten free.

 

 

 

 

 

 

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cyclinglady Grand Master
cyclinglady
Posted

My husband went gluten-free per the poor advice from my allergist and his GP. He was never tested for celiac disease. Turns out that after being gluten-free For 14 years he feels great! He refuses to do a challenge and I do not blame him. Gluten makes him sick! I was formally diagnosed two years ago. Hubby would be the first to say that I get a lot more support from medical, family and friends. It makes it easier for my kid to be tested as needed. Will it help in in the future? I do not know.

If your doctor could give you the dx by diet, family history and Gene testing, that would be great. If not, then you can be like my hubby and go gluten-free!

albauer94 Apprentice
albauer94
Posted
  • Author

Maybe I will call the GI and make an appointment to talk at the very least.  Maybe he has some compelling reasons to get tested.  At this point, all I really know is eating gluten makes me feel like crap.  The chiropractor I went to pretty much said that regardless of whether I stopped eating now or later, I would most likely develop celiac if I didn't already have it.

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      By deanna1ynne · Posted

      And thank you for your encouragement. I am glad that her body is doing a good job fighting it. I also just want clarity for her moving forwards. She was only 6 for the last round of testing and she's 10 now, so I'm also hoping that makes a difference. It was weird during her last round of testing though, because right before her biopsy, we'd upped her gluten intake by giving her biscuits made from straight up vital wheat gluten, and her labs actually normalized slightly (lower ttg and her ema went negative). Bodies just do weird things sometimes! lol
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      Inconclusive results

      By deanna1ynne · Posted

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    • Wends
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      Hopefully the biopsy gives a conclusive and correct diagnosis for your daughter. Im in the UK and have been in the situation a few years ago of trying to rule celiac in or out after inconclusive results. Many symptoms pointing to it including the classic symptoms and weight loss and folate and iron deficiency. You have to play a waiting game. I also had the label of IBS and likely food allergy. Genetic test showed low risk for celiac but not no risk. It sounds like the Gastroenterologist is on it and hopefully will diagnose what it is correctly. Food hypersensitivity (allergy) can also cause similar symptoms and inflammation as well as mimicking IBS. Milk / dairy and wheat (cereal grains) being the biggest culprits. The “oesophagitis” and “gastritis” you mentioned can be caused by another gastrointestinal disorder called “eosinophilic gastrointestinal disorders”. These are named depending on which part of the gastrointestinal tract is affected. For example eosinophilic oesophagitis, eosinophilic gastritis, eosinophilic gastroenteritis, and more rare eosinophilic colitis. They are antigen (allergen) driven. When the blood test measuring anti-ttg antibodies is positive in absence of a positive ema test - which is more specific to celiac, this can also suggest food hypersensitivity (allergy). Usually delayed type allergy similar to celiac but not autoimmune if that makes sense. In this case the ttg antibodies are transient. Which happens. I’ve first hand experience. For info, evidence of villous atrophy too can be caused by food hypersensitivity. Not just by celiac disease. In Egid disorders the six food elimination diet, under a dietitian and gastroenterologist care, is the dietary protocol to figure out the culprit or culprits. Sometimes only two food elimination diet is used at first. The number one culprit is milk protein / dairy. Followed by wheat, eggs, soy, fish and seafood, and nuts. Most are only reactive to one food group or two. Most are only reactive to milk. Hope this is a helpful reply.
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