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Pancreas Inflammation

k2626

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k2626 Explorer
k2626
Posted

Has anyone here had or heard of this with celiac?

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missy'smom Collaborator
missy'smom
Posted

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
JBaby
Posted

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
k2626
Posted
  • Author

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
missy'smom
Posted

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
deezer
Posted

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
deezer
Posted

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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      Is this celiac?

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      Help I’m cross contaminating myself,

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      Is this celiac?

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    • Theresa2407
      Is this celiac?

      By Theresa2407 · Posted

      Usually when I digest gluten or wheat I have a 4 hour window before reacting.  If it is immediate it may be an intollerence to another food.  Dairy, Frutose, and bacteria (SIBO) will react with many of the celiac disease symtoms.Has your Doctor ran a  Fructose test which is measuring your Fruit Sugar?  A Hydrogen Beath Test which checks your intestinal bacteria and Dairy?After my biopsy and blood work, these (3) tests were also ran, along with allergy tests, which allery test was sent out of State.  It was a mouth swab. How fast you heal depends on the diet you are following… The following are my personal recommendations to healing. I talk to many newly diagnosed people who start the gluten-free diet with pasta, breads, snacks, and pizza. After a month or so, they do not know why they don’t feel any better and still are sick with their original symptoms: They worry the diet is not working for them. For some there may be other factors involved, but most just aren’t letting their body heal properly. I blame the internet, and misinformation it contains. People want a quick fix, not realizing this is a life long disease. They need a good support group, with people who have been through this and knows what works!  This is what I have found will work for you.                                                                                            First 6 weeks should be:                                                                                                                                 lean meat (beef, pork, chicken, turkey, salmon, sardines, buffalo, deer)                                                   fresh vegetables (steamed or roasted with a little Olive Oil) with 2 cups per day being raw (5 servings; a serving is 1/2 cup)                                                                                                                                      fresh fruit (3 servings; include strawberries, blackberries and blueberries daily)  Makes good shakes with Almond milk.                                                                                                                                        A hand full of almonds daily (pecans and walnuts can be substituted)                                                        brown rice, lentils, Citrucel daily (or the equivalent) Good source of fiber. I use Calm because my body doesn’t absorb Magnesium and I only need to take once in evening.                                                    No dairy of any kind (milk, cheese, yogurt, No breads, No past,  No oats, No pizza, No gluten-free beer, No snacks like cake, biscuits, pies, donuts.                                                                                                Many dietitians will tell you to follow a gluten free diet but you have to heal first. Don’t misunderstand me, dietitians are our friends and help us.                                                                                              10% of people with gluten-free will be intolerant to dairy                                                                                  10% can not tolerate oats                                                                                                                     After the six weeks, you can start to add these foods back into your diet. 1 new food every 4 days; this way you know if you react to this food.                                                                                                  Oats shouldn’t be tried for 1 year after being diagnosed; then start with 1/3 of a cup. Only gluten-free Oats are acceptable.                                                                                                                                              You should have results within 3 days of following a correct healing diet. Bloating should be leaving, migraines should be gone. Might take bowels a little longer to respond. If you start with 5 times a day on the Citrucel and cut back as your bowels return to normal; then use 1 Tbsp. daily. This works if you have constipation or diarrhea.                                                                                                        Meanwhile make sure you have had a Dexa test (bone density) and a blood test to check your vitamin and mineral levels: Zinc, D,K,B,C and iron levels.                                                                                  Don't take supplements while healing as your body is not accepting them and they will flush through your body.                                                                                                                                              Have you had a breath test for Dairy, Fructose, and bacteria overgrowth? Should have done when first diagnosed.                                                                                                                                        How fast you heal depends on the diet you are following… The following are my personal recommendations to healing. I talk to many newly diagnosed people who start the gluten-free diet with pasta, breads, snacks, and pizza. After a month or so, they do not know why they don’t feel any better and still are sick with their original symptoms: They worry the diet is not working for them. For some there may be other factors involved, but most just aren’t letting their body heal properly. I blame the internet, and misinformation it contains. People want a quick fix, not realizing this is a life long disease. They need a good support group, with people who have been through this and knows what works! This is what I have found will work for you. First 6 weeks should be: lean meat (beef, pork, chicken, turkey, salmon, sardines, buffalo, deer) fresh vegetables (steamed or roasted with a little Olive Oil) with 2 cups per day being raw (5 servings; a serving is 1/2 cup) fresh fruit (3 servings; include strawberries, blackberries and blueberries daily) a hand full of almonds daily (pecans and walnuts can be substituted) brown rice lentils Citrucel daily (or the equivalent) Good source of fiber. No dairy of any kind (milk, cheese, yogurt) No breads No pasta No oats No pizza No gluten-free beer No snacks like cake, biscuits, pies, donuts. Many dietitians will tell you to follow a gluten free diet but you have to heal first. Don’t misunderstand me, dietitians are our friends and help us. 10% of people with gluten-free will be intolerant to dairy 10% can not tolerate oats After the six weeks, you can start to add these foods back into your diet. 1 new food every 4 days; this way you know if you react to this food. Oats shouldn’t be tried for 1 year after being diagnosed; then start with 1/3 of a cup. Only gluten-free Oats are acceptable. You should have results within 3 days of following a correct healing diet. Bloating should be leaving, migraines should be gone. Might take bowels a little longer to respond. If you start with 5 times a day on the Citrucel and cut back as your bowels return to normal; then use 1 Tbsp. daily. This works if you have constipation or diarrhea. Meanwhile make sure you have had a Dexa test (bone density) and a blood test to check your vitamin and mineral levels: Zinc, D,K,B,C and iron levels. Don't take supplements while healing as your body is not accepting them and they will flush through your body. Have you had a breath test for Dairy, Fructose, and bacteria overgrowth? Should have done when first diagnosed. Remember to have a tTg IgA blood test repeated at 6 months then every year after, with another scope done in 3 years. Only way to know if you are healed. I don’t have all the answers; we are learning everyday new ways of doing things, but this is a start! Remember to have a tTg IgA EMA blood test repeated at 6 months then every year after 
    • Wheatwacked
      Is this celiac?

      By Wheatwacked · Posted

      Marsh 3b is the Gold Standard of diagnosis for Celiac Disease.  Until recently, regardless of antibody tests, positive or negative, you had to have Marsh 3 damage to be awarded the diagnosis of Celiac. As I understand you,  you were having constant symptoms..  Your symptoms improved on GFD, with occassional flare ups. Did your doctor say you do and you are questioning the diagnosis? Regarding your increasing severity when you get glutened it is "normal".  Gluten acts on the Opiod receptors to numb your body.  Some report withdrawal symptoms on GFD.  I was an alcoholic for 30 years, about 1/2 pint of voda a day. Each time I identified a trigger and dealt with it, a new trigger would pop up.  Even a 30 day rehab stint, with a low fat diet (severe pancreatis) during which I rarely had cravings.  Stopped at a Wendys on the way home and the next day I was drinking again.  20 years later, sick as a dog, bedridden on Thanksgiving, after months of reasearch, I realized that gluten free was my Hail Mary.  Back in 1976 my son was diagnosed at weaning by biopsy with Celiac Disease and his doctor suggested my wife and I should also be gluten free because it is genetic.  At 25 years old I felt no gastro problems and promised if I ever did I would try gluten free.  Well, I forgot that promise until I was 63 and my wife 10 years dead.  Three days of gluten and alcohol free, I could no longer tolerate alcohol. Eleven years gluten and alcohol free, with no regrets. Improvement was quick, but always two steps forward and one back.  Over time I found nineteen symptoms that I had been living with for my entire life, that doctors had said, "We don't know why, but that is normal for some people". Celiac Disease causes multiple vitamin and mineral deficiency.  It is an autoimmune disease, meaning your immune system B and T cells create antibodies against ttg(2) in the small intestine in Celiac Disease, and sometimes ttg(3) in skin in Dermatitis Herpetiformus.  'Why' is poorly understood.  In fact, it wasn't even known that wheat, barley and rye gluten was the cause.  Celiac Disease was also called Infantilism, because it was deadly, and believed to only be a childhood disease. So, as part of your recovery you must deal with those deficiencies.  Especially vitamin D because it contols your immune system.  Virtually all newly diagnosed Celiacs have vitamin D deficiency.  There are about 30 vitamin and minerals that are absorbed in the small intestine.  With Marsh 3 damage you may be eating the amount everyone else does, but you are not absorbing them into your system, so you will display symptoms of their deficiency.   As time passes and you replenish your deficiencies you may notice other symptoms improve, some you did not even know were symptoms. Our western diet has many deficiencies built into it.   That is the reason foods with gluten are fortified.  Gluten free processed food are not required to fortify.  Vitamin D, Iodine, choline.  The B vitamins, especially Thiamine (B1) run deficient quickly.  We only store enough thiamine for 2 weeks so the symptoms of Gastrointestinal BeriBeri can come and go quickly.  Magnesium, zinc, etc. each having its own symptoms affecting multiple systems.  High homocystene, an indicator of vascular inflamation can be cause by deficient Choline, folate, B6 and or B12.  Brain fog symptoms by deficient choline, iodine, thiamine B1. Dietary intake of choline and phosphatidylcholine and risk of type 2 diabetes in men: The Kuopio Ischaemic Heart Disease Risk Factor Study  
    • Rogol72
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      I cut out the rice because it was affecting my stomach at the time ... not necessarily dermatitis herpetiformis. It was Tilda Basmati Rice, sometimes wholegrain rice. I was willing to do whatever it took to heal. Too much fiber also disagrees with me as I have UC.
    • trents
      Is this celiac?

      By trents · Posted

      But you didn't answer my question. When you consume gluten, is there an identifiable reaction within a short period of time, say a few hours?
    • Scott Adams
      Is this celiac?

      By Scott Adams · Posted

      You can still have celiac disease with negative blood test results, although it's not very common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/   
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