Gluten Allergy

[MMeade]

Hello, I am new to your forum. I was diagnosed with multiple food allergies including gluten, 20 years ago. I do not have celiac disease. I have been gluten free for over 15 years. My symptoms seem to be very different than others and my doctors have always been skeptical about my condition. When I would accidentally eat gluten, the inflammation would cause my GI system to stop- i.e severe constipation. This eventuality led to diverticulitis which, due to numerous factors, led to abscesses and removal of my sigmoid colon 3 years ago. 
Biopsies were done and confirmed that I do not have celiac disease. I do have other autoimmune diseases- Hashimotos hypothyroiditis. 

I remain gluten free for fear of damaging the remaining colon I have left. My question to this group is- am I alone in this odd scenario? Does anyone else have this condition? When I lived in Seattle, many naturopaths understood my symptoms and condition but after moving to Kentucky, I can find no one that seems to understand or even believe my condition exists. I sometimes feel like maybe I could eat gluten again because it is so hard to avoid it in this part of the country - choices are much more limited- but again, I am fearful of injuring my remaining, colon. Any insight from others who may have experienced similar symptoms is greatly appreciated since I am feeling vey alone in my crusade to stay healthy. 
 

As an aside, while the sigmoid colon removal left me diverticulitis/diverticulosis free, it also left me with less muscle control, so I now take magnesium supplements (oxygenated magnesium oxides) to  maintain regular bowel function and avoid constipation.

Thank you- I appreciate the kindness and support this group brings to people. 

[Scott Adams]

Welcome to the forum--and you are absolutely not alone in your experience with a non-celiac gluten sensitivity that presents with severe constipation and profound inflammatory consequences. While the more commonly discussed symptoms are diarrhea-centric, your reaction is a valid and documented, though less common, manifestation. It is completely understandable to feel isolated, especially after moving to an area with less familiarity with this specific presentation, but your vigilance in protecting your remaining colon is not just justified, it is critically important. Your history of autoimmune disease (Hashimoto's) further supports the likelihood of your body mounting a significant inflammatory response to gluten. Many in this community share similar frustrations with a skeptical medical community and the social challenges of maintaining a strict diet, so please know you have found a place where your condition is believed and understood. Staying gluten-free to prevent further damage is the safest path for your health, and we are here to support you in that crusade.

[knitty kitty]

Welcome to the forum, @MMeade!

I found taking Thiamine Vitamin B1 in the form Benfotiamine helpful.  I have Celiac, hypothyroidism, and diverticulosis.  Inflammation caused by Celiac or allergic reactions cause "leaky gut syndrome" which allows food particles to pass from the intestines into the blood stream where they cause further inflammation in the body and organs.  This inflammation can also prevent absorption of essential vitamins and minerals like thiamine and magnesium.

Benfotiamine and its anti-inflammatory properties helps heal the intestines.  Benfotiamine also influences the microbiome in favor of beneficial bacteria, so it can help protect the intestines from bad bacteria that can cause a diverticulitis flair up.  I'm concerned about keeping my diverticulosis in check so I don't have to have my colon removed.  

Benfotiamine helps the thyroid work better and relieves the fatigue that accompanies Hashimoto's.  

Benfotiamine and magnesium work together to relieve constipation.  I take magnesium glycinate which is more gentle on the digestive system than magnesium oxides.  Magnesium oxides can be harsh on the digestive system because they pull water into the colon and the magnesium is not absorbed.  

I follow a Paleo diet, the Autoimmune Protocol Diet, which limits carbohydrates.  I have type two diabetes, which is another autoimmune disease that is improved with thiamine (Benfotiamine).   I avoid processed gluten free facsimile foods because they are pretty much empty calories with little to no nutritional value.  It's a matter of retraining your brain to recognize a healthy diet.  Our bodies run better on healthy Omega three fats like olive oil or avocado oil.  I do have rice or potatoes occasionally, but feel much better without them.  

The biopsies that were done, were they done on the removed colon?  Celiac cannot be diagnosed by examining the colon!   Biopsies from the small intestine needs to be examined microscopically for damage done by Celiac antibodies after a gluten challenge.  But not everyone can or should do a gluten challenge.  Genetic testing is warranted in that case.  

Have you had a genetic test to see if you have any genes for Celiac?  Most people have HLA DQ 2 or DQ 8, but there are other Celiac genes out there.  

You're not alone.  You have the whole tribe behind you now!

Edited September 20 by knitty kitty
Typo correction

[MMeade]

Thank you so much Scott- hearing this actually brought tears to my eyes! It is so hard to explain to people/in-laws who question me all the time- I’ve considered just telling them I have celiac disease to stop the questions. Knowing I’m not alone helps tremendously. Thank you 🙏 

[MMeade]

Thank you so much @knitty kitty, I really appreciate all the feedback. I have had 2 biopsies of my small intestine that are negative for celiac disease. I have not had the genetic testing though, so that is something I will look into, since the biopsies were done without a prior gluten challenge. I tried one once before an allergy test and was sick for days. I do know that I don’t easily methylate my b vitamins but have to be careful taking methylated versions as they give me too much energy and I can’t sit still or sleep. 
 

I also prefer magnesium glycinate but I only take it in the mornings because I have to take it with food to avoid stomach upset. I’ve often wondered if I have leaky gut syndrome and my symptoms indicate yes. I appreciate hearing what works well for you. I think I’ll focus on benfotiamine and see if I can tolerate it and/or it makes a difference. I really need to find a good nutritionist or naturopath. I’ll keep looking. In the meantime, thank you for your support!

[knitty kitty]

@MMeade,

People who get over-methylated are frequently low in Pyridoxine Vitamin B6.  Pyridoxine helps regulate the methylation process so it doesn't run amok.  P-5-P is the active form.

All eight essential B vitamins work in concert together.  Just taking one or two can throw the rest out of balance.  If you have malabsorption as occurs in Celiac, then all the B vitamins will be poorly absorbed.  Taking a B Complex in addition to extra thiamine (Benfotiamine) is safe.  The B vitamins and Vitamin C are water soluble.  Any excess is urinated out.  I took a B 50 Complex twice a day to increase absorption.  

Try taking Magnesium Threonate (Neuro-Mag by Life Extension).  Magnesium Threonate can get into the brain easily.  The brain needs magnesium, too, but other forms don't cross the blood-brain barrier as well.  

The first time I took Magnesium Threonate, it felt like my brain relaxed.  I highly recommend it.  

How's your Vitamin D level?  

[Scott Adams]

The concept of "over-methylation" as a common clinical condition is not supported by mainstream medicine. While methylation is a crucial biochemical process, the idea that people frequently become "over-methylated" and that this is linked to B6 deficiency is a speculative theory, not an established fact. 

[knitty kitty]

Yes, I know.  

Without sufficient Folate, Cobalamine, and Pyridoxine, the body can't get rid of high homocysteine levels.  High homocysteine levels make one restless, interferes with sleep and resembles ADHD symptoms.  High homocysteine levels occur in Celiac Disease.  Chronic high histamine levels lead to high homocysteine levels.

Impact of supplementation with vitamins B6 , B12 , and/or folic acid on the reduction of homocysteine levels in patients with mild cognitive impairment: A systematic review

https://pubmed.ncbi.nlm.nih.gov/34058062/

Homocysteine, Pyridoxine, Folate and Vitamin B12 Levels in Children with Attention Deficit Hyperactivity Disorder

https://pubmed.ncbi.nlm.nih.gov/30267523/

Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond

https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/

Prevalence of hyperhomocysteinemia in adult gluten-sensitive enteropathy at diagnosis: role of B12, folate, and genetics

https://pubmed.ncbi.nlm.nih.gov/15952099/

Homocysteine, Vitamins B6 and Folic Acid in Experimental Models of Myocardial Infarction and Heart Failure-How Strong Is That Link?

https://pubmed.ncbi.nlm.nih.gov/35454125/

Edited September 23 by knitty kitty
Clarification