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Pancreas Inflammation


k2626

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k2626 Explorer

Has anyone here had or heard of this with celiac?


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missy'smom Collaborator

There is a link that has been reported between Type 1 diabetes, both classic and Latent Autoimmune Diabetes in Adults(Type 1.5), and Celiac Disease/Wheat Allergy. In both types of type 1, for some people, the consumption of wheat/gluten causes the immune system to attack the pancreas. There are a few with diabetes out there with type 1.5 who are working on identifying their triggers(gluten, casein etc.), eliminating them and stopping the attack on the pancreas. There is one gal out in the bloggosphere who has been able to get off insulin by doing this and has decreased the number of special antibodies(GAD) involved.

Type 1.5 folks are often misdiagnosed as type 2. Unlike type 1 childhood onset, it developes slowly and some may still be producing some of their own insulin at the time of diagnosis so if they stop the immune attack and follow a low-carb diet, they may be able to preserve the remaining insulin producing cells.

This may or may not relate to what's going on with you.

JBaby Enthusiast

Hi again, I replied to your personal message. To add to the post above, I agree about the diabetes/insulin/pancreas connection. To add my own experience that has irritated people on this board, who disagree with my statements, however: it is critical to work with a nutritionist who knows about celiac, ESPECIALLY if you pancreatic pain/attacks. I have found great nutritionist. No pain in last 3 weeks and feeling the best I have ever felt. I struggled trying to go this alone and did not succeed. DOn't know if your in Pittsburgh area, but he may do phone consults. What he has me doing may not be right for you. Celiac may be the same for all of us but we all have diff affects/damage that needs healed and treated differently. Going Gluten-Free is not the only way to health as a celiac. Consult a professional.

k2626 Explorer

Thank you both- I really appreciate it. I dont know if I am gluten intolerent- trying to be my own dr as my drs are puzzled as to what is going on. My labs for celiac were clear.

Here is my history

35 yr female

4 yrs ago was diagnosed with (gerd)

2 yrs ago started to get neuropathy (muscle twitching all over, stinging/stabbing pains that hit my joints and migrated)

1 1/2 yrs ago started to get upper left sided pain, lipase was doubled-pancreatitis but mild. However, remained elevated for awhile (have not checked in a long time to see where its at). All scans were clear, did not show inflammation. Had a good 4 months of little pain and it started up this past week again.

I am allergic to a ton in terms of grass, mildew etc.. had to have allergy shots daily as a kid, then twice a wk as an adult. Not sure if that means anything.

I think this all must be connected...drs think so as well but have no idea what it all is

missy'smom Collaborator

Cow's milk allergy has also been linked with autoimmune diabetes. There is more to the pancreas than just diabetes and insulin I think. But that's what my challenge is so that's the perspective I can share.

You might do well to explore food allergies and intolerances. I'm reading a book now that I think is well written. It's called Food Allergies and Food Intolerances by Jonathan Brostoff, M.D. and Linda Gamlin.

There are tests that can be done to help give us direction. Sadly, we end up being our own doctors sometimes. But we shouldn't have to figure it all out. Know your body well, do your homework and use the medical resources you have. I wish my doctor would figure some of these things out for me but at least he'll humor me and run the tests that I ask for so I do my homework and keep a list to ask him for each time I go in. Sometimes I bring documentation to back up my request.

deezer Apprentice

Hi again, I replied to your personal message. To add to the post above, I agree about the diabetes/insulin/pancreas connection. To add my own experience that has irritated people on this board, who disagree with my statements, however: it is critical to work with a nutritionist who knows about celiac, ESPECIALLY if you pancreatic pain/attacks. I have found great nutritionist. No pain in last 3 weeks and feeling the best I have ever felt. I struggled trying to go this alone and did not succeed. DOn't know if your in Pittsburgh area, but he may do phone consults. What he has me doing may not be right for you. Celiac may be the same for all of us but we all have diff affects/damage that needs healed and treated differently. Going Gluten-Free is not the only way to health as a celiac. Consult a professional.

Who is your nutritionist?

deezer Apprentice

Cow's milk allergy has also been linked with autoimmune diabetes. There is more to the pancreas than just diabetes and insulin I think. But that's what my challenge is so that's the perspective I can share.

You might do well to explore food allergies and intolerances. I'm reading a book now that I think is well written. It's called Food Allergies and Food Intolerances by Jonathan Brostoff, M.D. and Linda Gamlin.

There are tests that can be done to help give us direction. Sadly, we end up being our own doctors sometimes. But we shouldn't have to figure it all out. Know your body well, do your homework and use the medical resources you have. I wish my doctor would figure some of these things out for me but at least he'll humor me and run the tests that I ask for so I do my homework and keep a list to ask him for each time I go in. Sometimes I bring documentation to back up my request.

I just had an IgG allergy profile done and I found I have a very strong Cow's milk allergy. I was diagnosed with Celiac a few months ago through biopsy & TtG blood test.


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    • trents
      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
      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
      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
      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
      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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