Regression or non responsive?

[Kathryn T]

Hi! New to the group and page. Diagnosis by both IgA, IgG and endoscopy at Stage 3b, in 2016 at 65 years old.

Strict gluten free diet since, but as of past April (exactly 2 weeks after my second covid vaccine), I began quick onset diarrhea and weight loss. This has lasted through August, but is now beginning to right itself. New biopsy and tests show I’m back at square one, but non responsive now. I have never been off the gluten-free diet since diagnosis.

  Has anyone else had a possible autoimmune reaction (in your celiac) from the Pfizer Covid vaccine? Possibly the PEG?

 Thank you!

[Ivana]

Hello,

I would like to ask you what you mean by non responsive? Wouldn't it be too soon to tell whether you will get it under control again or not on gluten free diet after whatever caused the autoimmune reaction again? If I understood correctly, the symptoms improved in August? 

I had two Pfizer shots and I didn't have any reactions and am getting ready for a third shot but experiences like yours do make me worried  a bit. 

[Kathryn T]

Hi…. I finished the vaccine the end of March. The diarrhea has ended and stools are better, but I’m no longer responding to a gluten-free diet. In other words, my iron, ferritin, etc is not building again.

 I think mine is an aberration.

[Scott Adams]

Is it possible that you’re getting small amounts of gluten contamination in your diet, perhaps if you eat outside your home, or via a medication or supplement?

[Kathryn T]

Thanks, Scott!

hubby is last stage COPD, I’m mostly his caregiver, only go out for picking up groceries or essentials… never to restaurants or pre made food. I am tearing apart my kitchen again as we speak, but I just can’t figure it out. 

[Wheatwacked]

I am sorry to hear you and hubby are not well. I wish you well. I was my wife's Kathy caregiver through stage 4b ovarian cancer. She passed when I was 55 and am 70 now, my son had celiac disease as an infant and I started GFD at 63 so I've been rather obsessed with this for a while.

Celiac Disease is a disease of malabsorbtion. It's starts with an autoimmune response to gluten that damages the small intestine. From there it spirals down with multiple essential vitamin and mineral deficiencies that compounds the effects. And that is assuming that unlike most Westerners you are not already deficient in multiple nutrients due to misguided healthy eating advice (like eggs and red meat are bad for cholesteral). Diahrea causes potassium loss from your large intestine. It has become a nutrient of concern worldwide.

COPD is also thought to be autoimmune response so I believe these suggestions would be helpful to you both.

So far the only supplement I know of, that does not rape your pocketbook, to have 100% of almost all the vitamins and minerals is Geritol Multivitamins. Do you remember Arthur Godfrey? It might be worth trying for you both.

Second, vitamin D in particular. Lots of research saying that higher levels of it can mitigate the overactive immune response.   Vitamin D and the Immune System   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3166406/ published back in 2011, so it is not new, just ignored.

I recently posted a daily meal plan that I created for myself that has 100% and added to the Geritol you may find helpful. 

This is the meal plan I came up with to get all the vitamins and minerals from food everyday. It is a minimum, so you can add anything you feel like (gluten free) to be satiated. Supplement vitamin D. It's only 4% RDA. Calcium is 96%. Niacin 81%. Everything else >125% min RDA. 2600 calories. The coffee is for my ADD, milk and ice cream for calcium. Parsley vitamin K, Almonds vitamin E, beans folate and potassium. Nori for iodine.

https://www.celiac.com/uploads/monthly_2021_11/image.png.88a0da51b301e958188ee228bbc3cf44.png

 

 

[Kathryn T]

Thank you, I will read and absorb what you’ve written and your references!

  God bless and be safe.

[GF-Cate]

On 11/27/2021 at 12:30 PM, Scott Adams said:

Is it possible that you’re getting small amounts of gluten contamination in your diet, perhaps if you eat outside your home, or via a medication or supplement?

I would second that. 

It may be difficult to do right now with all you have on your plate right now but check and double check things like spices, makeup/body care products that come in contact with your mouth (especially lipbalm and lipstick), gums & mints, toothpaste & dental care products, and as Scott said supplements and medications (and things like NSAIDs, cough drops, allergy meds, and any other OTC med). I find packaged nuts are a huge offender for cross-contamination. I've started to buy them in shell to avoid CC because I can't tolerate any cross-contamination.

Also any household products that could possibly contain gluten (in my house it was fish food flakes & dog food - kids would feed them, not wash hands, touch stuff, I would get CCed).

For me only certifed gluten-free labeled products work. I was reacting to non-certifed, so had to make the switch. That made a huge difference for me.

It's also possible that you've developed a sensitivity to another food.

 

 

[Kathryn T]

On 11/28/2021 at 2:27 PM, GF_Cate said:

I would second that. 

It may be difficult to do right now with all you have on your plate right now but check and double check things like spices, makeup/body care products that come in contact with your mouth (especially lipbalm and lipstick), gums & mints, toothpaste & dental care products, and as Scott said supplements and medications (and things like NSAIDs, cough drops, allergy meds, and any other OTC med). I find packaged nuts are a huge offender for cross-contamination. I've started to buy them in shell to avoid CC because I can't tolerate any cross-contamination.

Also any household products that could possibly contain gluten (in my house it was fish food flakes & dog food - kids would feed them, not wash hands, touch stuff, I would get CCed).

For me only certifed gluten-free labeled products work. I was reacting to non-certifed, so had to make the switch. That made a huge difference for me.

It's also possible that you've developed a sensitivity to another food.

 

 

Thank you… I’m trying to do all that daily, have almost always gone to certified gluten-free foods, but have taken any else out. Perhaps it’s just a matter of time, and rechecking the meds with the pharmacy and demanding gluten-free. The supplements are gluten-free too, so I’m playing with the idea it’s another food, also. I no longer tolerate dairy or possibly eggs… getting rather dubious. I just need my ferritin and iron to get back, that’s a long haul.

[Blue-Sky]

I would try supplementing with soluble fiber regularly, some probiotics,  along with some flavinoids (say from tea) and eating a mainly vegetable based diet for a while to get optimum bacteria. Psyllium husks are a good option, as they may reduce the symptoms of IBS-d. I did a thread earlier on that topic.  An elimination diet such as the AIP or Dr. Fresno's (a celiac disease expert) cross contamination elimination diet could be helpful. 

I got two doses of the covid vaccine (a different one I think) and I haven't had any problems either time.

[GF-Cate]

2 hours ago, Kathryn T said:

I no longer tolerate dairy or possibly eggs… getting rather dubious. I just need my ferritin and iron to get back, that’s a long haul.

I am struggling with these things too. It's so frustrating to feel like we're doing everything we can and still not getting the results we are aiming for while adding more things to remove from our diets. I hope you're able to figure out the cause. 

[Kathryn T]

21 minutes ago, GF_Cate said:

I am struggling with these things too. It's so frustrating to feel like we're doing everything we can and still not getting the results we are aiming for while adding more things to remove from our diets. I hope you're able to figure out the cause. 

Thank you, at almost 71, I’m just frustrated and have no idea after five years ‘clean’ what May have happened… 

Good luck to you on this journey through the unknown!

[Kate333]

Hi Kathryn.  I haven't heard any reports of Covid vaccine GI upset as a side-effect.   

I DO know--from personal experience--how much chronic, severe stress can affect the gut (our "second brains"), and it appears that you are under perhaps more stress than most--what with the added burden of worry, caring for a very ill husband in the midst of the pandemic.  My guess is severe stress is contributing to your digestion issues.  Also, many people with celiac disease become so afraid of, turned off of eating, that they significantly reduce their daily calorie intake without realizing it and the unintended result is weight loss and vitamin deficiencies.   

Instead of worrying and speculating, I suggest you ask your GI for a consult (even via phone or internet) to discuss your concerns re: recent tests results and answer any Qs you have.  It sounds a bit like you are jumping to conclusions, assuming you have refractory celiac disease (non-responsive to gluten-free diet).  If that were the case, your doctor would have said so.   If you had a TTG test recently and the numbers were high/abnormal, that is not likely non-responsive celiac disease but more likely indication that you are still regularly getting exposed to gluten.

Best of luck to you on your healing journey.    

 

[Kathryn T]

8 minutes ago, Kate333 said:

Hi Kathryn.  I haven't heard any reports of Covid vaccine GI upset as a side-effect.   

I DO know--from personal experience--how much chronic, severe stress can affect the gut (our "second brains"), and it appears that you are under perhaps more stress than most--what with the added burden of worry, caring for a very ill husband in the midst of the pandemic.  My guess is severe stress is contributing to your digestion issues.  Also, many people with celiac disease become so afraid of, turned off of eating, that they significantly reduce their daily calorie intake without realizing it and the unintended result is weight loss and vitamin deficiencies.   

Instead of worrying and speculating, I suggest you ask your GI for a consult (even via phone or internet) to discuss your concerns re: recent tests results and answer any Qs you have.  It sounds a bit like you are jumping to conclusions, assuming you have refractory celiac disease (non-responsive to gluten-free diet).  If that were the case, your doctor would have said so.   If you had a TTG test recently and the numbers were high/abnormal, that is not likely non-responsive celiac disease but more likely indication that you are still regularly getting exposed to gluten.

Best of luck to you on your healing journey.    

 

Thank you… I am under a lot of stress, for sure.

  My GI specialist says it’s non responsive, didn’t say refractory… my ttg  showed only a 15, which is negligible in my opinion, but they believe that is the cause. None of the GI specialists I see are very versed on celiac disease, to them the ‘cure’ is gluten free or none. There are no celiac specialists in my network of doctors… thanks for being honest!

  Best of luck to you too!

  

[Wheatwacked]

If you can't eat eggs, supplement with choline around 1000 mg a day. RDA is 550 mg. The food plan I posted has 55 grams of fiber mostly from the oatmeal and beans.   And the fiber feeds the benificial bacterial in your gut. You have to eat, why not eat the nutrition you need to recover.

You might look at Dr. Fuhrman's Six Week Plan from his book Eat to Live.  https://www.drfuhrman.com/content-image.ashx?id=65bmpmv85xis8pq9kmo8xz.  You can google others. All the medicine in the world won't help if you are not eating the tools (vitamins and minerals) to process the raw materials (protein, fat, carbs) to need to live.

Dr. Mark Hyman: How Functional Medicine Helps Us Take Back Our Energy, Focus & Lives   

 

My younger brother pointed out: your lawn will look better if you feed it than if you just kill the weeds.