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Possible Celiac Diagnosis

aoife17

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aoife17 Newbie
aoife17
Posted

Hi, for over 2 years I have had random pains in my legs, joints and arms. I have also suffered from excessive bloating, which has gradually got worse to the extent I can't even drink a small glass of coke anymore. I did a blood test and it came back with low calcium, when I repeated it came back normal. The doctor believed I had sciatica. But I continued to have the symptoms which had progressed to tiredness, dry skin and occassional stomach ache. In my 3rd blood test I demanded a celiac one, it came back saying I didn't have celiac but this time it was low in iron. I now get stomach pains when ever I eat something containing a lot of gluten, I am unsure if it is a subconscious thing. For example I had a baguette recently and felt ill all night, and I hadn't been thinking it contained gluten. Then I had a packet of crisps that contained gluten and I felt fine. 

 

My grandfather had celiac's disease, I was wondering if anyone thinks it is possible I could have it when the blood test said I didn't?

 

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notme Experienced
notme
Posted

my blood test(s) came back negative, but i was already eating gluten-free.  i understand that false negatives are pretty common.  my doc did an endoscopy anyway and that's how i got diagnosed as having celiac disease.  they also tested many other things, as well, to be sure to rule out any other diseases.  my vitamin levels were wacky, too.   

bartfull Rising Star
bartfull
Posted

Celiac runs in families. There are a bunch of different tests. Can you post here what the test was that you had? There are several that should all be run, and of course as notme said, a biopsy is considered the gold standard. But you have to make sure you have a good doctor! Some of them only take one or two samples and they miss the damaged part.

Deaminated Marcus Apprentice
Deaminated Marcus
Posted

If your grandfather had it then that is a big red flashing light with a big horn going off type of warning. 

psawyer Proficient
psawyer
Posted

If your grandfather had it then that is a big red flashing light with a big horn going off type of warning.

Well, maybe. You inherited 25% of your genes from your grandfather. About 33% of the American population have at least one gene associated with celiac disease. About 1% actually have celiac disease. It is an indicator that you should consider, but don't lead a parade down main street about it.  :o

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  • Recent Activity

    1. trents
      - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    2. Ello
      - Ello replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      Small Bowel Resection 12 inches

      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results. Thank you
    3. trents
      - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      Small Bowel Resection 12 inches

      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to...
    4. Ello
      - Ello replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response.
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      - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      Small Bowel Resection 12 inches

      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes...
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    • trents
      Small Bowel Resection 12 inches

      By trents · Posted

      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      Small Bowel Resection 12 inches

      By Ello · Posted

      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Small Bowel Resection 12 inches

      By trents · Posted

      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Small Bowel Resection 12 inches

      By Ello · Posted

      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      Small Bowel Resection 12 inches

      By trents · Posted

      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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