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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
      I don't know of a connection. Lots of people who don't have celiac disease/gluten issues get shingles.
    • Ginger38
      I’m 43, just newly diagnosed with a horrible case of shingles last week . They are all over my face , around my eye, ear , all in my scalp. Lymph nodes are a mess. Ear is a mess. My eye is hurting and sensitive. Pain has been a 10/10+ daily. Taking Motrin and Tylenol around the clock. I AM MISERABLE. The pain is unrelenting. I just want to cry.   But Developing shingles has me a bit concerned about my immune system which also has me wondering about celiac and if there’s a connection to celiac / gluten and shingles; particularly since I haven't been 💯 gluten free because of all the confusing test results and doctors advice etc., is there a connection here? I’ve never had shingles and the gluten/ celiac  roller coaster has been ongoing for a while but I’ve had gluten off and on the last year bc of all the confusion  
    • Russ H
      There were some interesting talks, particularly Prof Ludvig Stollid's talk on therapeutics for coeliac disease.    https://www.youtube.com/playlist?list=PLRcl2mPE0WdigRtJPvylUJbkCx263KF_t
    • Rejoicephd
      Thank you @trents for letting me know you experience something similar thanks @knitty kitty for your response and resources.  I will be following up with my doctor about these results and I’ll read the articles you sent. Thanks - I really appreciate you all.
    • knitty kitty
      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
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