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My Dx

Kelleigh

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Kelleigh Newbie
Kelleigh
Posted

Hi -

I got my dx today from Entero - do you agree with my assessment? Celiacs with an intolerance with soy and dairy....

Any thoughts would be helpful -I can't see my doc until next week...

Thanks!!

A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value

Fecal Antigliadin IgA 29 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 17 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 294 Units (Normal Range <300 Units)

Fecal anti-casein (cow

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gfpaperdoll Rookie
gfpaperdoll
Posted

Hi welcome to the board, looks like you have double DQ1 genes, same as me & my family. There is a double DQ1 thread on the "Coping With" forum, you might want to also post your symptoms, questions etc there. Us double DQ1's like to get to know each other. Do you have any other auto immune illnesses? Is your family from Ireland & England orginally? Anyone in your hfamily ever been diagnosed with hemochromatosis?

With those genes you are considered gluten intolerant, you can google that & come up with a lot of information. this forum does recognize gluten intolerance to a degree, but really it is all the same you still have to avoid gluten and for you dairy also. It is my opinion and some of the other gluten intolerant people that gluten intolerance is nothing more than the beginning stages of celiac, of course you can have double DQ1 & still be dxd by biopsy. 1% of biopsy dxd celiacs do not have DQ2 or DQ8. most of us just say celiac because it is shorter, although that bugs some people ;)

Do you have neurological symptoms also? It is very prevalent with DQ1 genes. Do you have other food sensitivities, "allergies" a lot of us DQ1's also fall into those categories.

Do you know what blood type you are? You can also google double DQ1...

gfpaperdoll Rookie
gfpaperdoll
Posted

Here is a link to the Gluten Intolerance Group Open Original Shared Link

Kelleigh Newbie
Kelleigh
Posted
  • Author

Hi -

Wow. Answers for you: yes - I have Hashimotos Thyroiditis. My fam is Irish and English decent. I don't even know what hemochromatosis is, so I'll have to google that one. ;-) I suffer from migraines as do my Mom, Dad and brother. A Pos on the blood type. I don't have other allgergies that I know of, but this all seems to be a work in progress....

Thanks for the info and reply!

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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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      - Ello replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      Small Bowel Resection 12 inches

      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

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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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