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Got My Diagnosis Today

hsmomof6

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hsmomof6 Rookie
hsmomof6
Posted

I was referred back to my PCP by the NP at the GI office. The NP had told me I did not have Celiac, even though my antigliadin IgA was very positive, because everything else was negative. My PCP took one look at my blood work and said, "you have Celiac disease." It turns out she has Celiac herself and is very knowledgeable about it. She said I could go back on gluten (been off almost 3 weeks now) and do an endoscopy, but she didn't want to put me through that and had no problem diagnosing me through the blood test and symptoms. It seems weird to feel relieved, but at least I feel like I have an answer now. She told me her story and it was very similar to mine, all the GI symptoms and being tested for everything under the sun before being tested for Celiac. She was actually blood test negative, but biopsy positive.

So, I've been gluten-free for a few weeks and I'm never going back. I am so thankful for the support and information shared on this board. It was really helpful for me in accepting the whole gluten-free thing. It was really overwhelming at first and now I feel a lot better about it. Still mourning some of my favorite foods, but I know I'll find alternatives that won't hurt me.

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kareng Grand Master
kareng
Posted

I want your doctor! Please tell me you live in the Kansas City area! Please! :unsure:

hsmomof6 Rookie
hsmomof6
Posted
  • Author

Sorry, Jacksonville, FL :-(

ravenwoodglass Mentor
ravenwoodglass
Posted

Sounds like you have a good doctor. I hope you heal quickly. Hopefully she let you know that all 1st degree relatives should also be tested even if they don't seem to have any issues.

hsmomof6 Rookie
hsmomof6
Posted
  • Author

What kind of test should my children have done? I was talking about this with my daughter and son this afternoon.

ravenwoodglass Mentor
ravenwoodglass
Posted

What kind of test should my children have done? I was talking about this with my daughter and son this afternoon.

They should have full celiac panels and if they choose to and have symptoms an endoscopy might be something to think about. Do be aware of false negatives so if any family members have symptoms, even ones not GI related like depression, skin issues, fibro or arthritis for examples, a trial of the diet is a good idea even if tests are negative.

In my family I was persistantly tested as I was very ill and text book celiac symptom wise and always came back negative. Both my children and my ex showed up in blood work.

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  • Recent Activity

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

      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...
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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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      Small Bowel Resection 12 inches

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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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