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Could I Be

lmnap

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lmnap Newbie
lmnap
Posted

Hi. I just had the blood test for Celiac on monday and am awaiting the results. My Aunt was diagnosed about 10 years ago and encouraged everyone in the family to get the bloodtest. So far, everyone's test came back negative. I have been putting off getting tested because I never thought I had the symptoms and about 8 years ago I asked my doctor if I should get tested and she said, "No. You're not under weight". Gee thanks! Anyway, now that I've actually taken the time to research the disease, I realize I may have had symptoms for many years. I pretty much get sick to my stomach every time I eat at a restaurant, I get gassy and bloated everyday and 8 years ago my daughter was born IUGR without any explaination. She was only 4 pounds at full term. Although I am not underweight(as the doctor so kindly pointed out) I've always maintained a healthy weight without trying. I am quite a big eater too. Especially carbs. Obviously the bloodtest will let me know for sure but I was wondering if anyone thinks it sounds like I have it?

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psawyer Proficient
psawyer
Posted

Welcome to the board.

While being underweight is a common symptom, it is by no means universal. Your symptoms are consistent with celiac disease so it is a definite possibility.

Kay DH Apprentice
Kay DH
Posted

Keep in mind that a negative result can still mean a person has gluten sensitivity, sub-clinical celiac, or just wasn't eating enough gluten to ping the antibodies and get a positive blood test. If the test is negative, you might try the gluten-free diet for a while to see if it makes a difference in your GI and other symptoms. My GI dismissed my having celiac because I'm normal weight, don't have anemia, and "only have a 10% chance of with with my HLA-DQ8 gene." Even minor cc causes a lot of symptoms in me. So, sometimes the best test is what your body tells you.

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    • Wends
      Inconclusive results

      By Wends · Posted

      Lol that’s so true! Hope you get clarity, it’s tough when there’s doubt. There’s so much known about celiac disease with all the scientific research that’s been done so far yet practically and clinically there’s also so much unknown, still. Out of curiosity what’s her dairy consumption like? Even compared to early years to now? Has that changed? Calcium is dependent in the mechanism of antigen presenting cells in the gut. High calcium foods with gluten grains can initiate inflammation greater.  This is why breakfast cereals and milk combo long term can be a ticking time bomb for genetically susceptible celiacs (not a scientific statement by any means but my current personal opinion based on reasoning at present). Milk and wheat are the top culprits for food sensitivity. Especially in childhood. There are also patient cases of antibodies normalising in celiac children who had milk protein intolerance/ delayed type allergy. Some asymptomatic. There were a couple of cases of suspected celiacs that turned out to have milk protein intolerance that normalised antibodies on a gluten containing diet. Then there were others that only normalised antibodies once gluten and milk was eliminated. Milk kept the antibodies positive. Celiac disease is complicated to say the least.
    • deanna1ynne
      Inconclusive results

      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
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      The first negative biopsy in 2021 just said "no pathological change" for all the samples, and the second one in 2022 said "Duodenal mucosa with mild reactive change (focal foveolar metaplasia) and preserved villous architecture." So I think Marsh score 0 in both cases, though it's not actually written in the pathology reports. I'm really hoping to get a clear positive result this time, just for her sake.  
    • Wends
      Blood results

      By Wends · Posted

      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.
    • Bennyboy1998
      Potential celiac need advice

      By Bennyboy1998 · Posted

      Yes gene HLADQ2 was positive 
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