Symptoms Now Seem Related to Gluten

“I do want to emphasize how good the food is, though”. That made me laugh.

So have you been tested for celiacs? Antibody test? Endoscopy?

I have, and mine was negative, so i thought I was in the clear. But after I went on the 6m ketosis diet, the first time I ate a piece of bread after that my stomach hurt like crazy. It now happens every time I eat bread, like there’s a knot in there. I def have a gluten sensitivity that I did not know about. I have not had gluten since I figured it out.

Sensitivity like that can def cause all sorts of symptoms

Before my body went psychotic with mcas, typical symptoms of my food intolerances (not proper allergies) were what might be described as a migraine but I usually thought of it as inflammation in head so severe I was sensitive to light and might throw up and stomach pain. Gluten casein and soy caused these issues for me.

“The spectrum of gluten-related disorders includes celiac disease, dermatitis herpetiformis, gluten ataxia, wheat allergy and non-celiac gluten sensitivity. The term non-celiac gluten sensitivity (NCGS) is used to describe the clinical state of individuals who develop symptoms when they consume gluten-containing foods and feel better on a gluten-free (GF) diet but do NOT have celiac disease.”

My son has celiac disease - and it damaged his intestines.

You may have non celiac gluten sensitivity - which means you wouldn’t test positive for antibodies and no damage to your intestines.

https://www.health.harvard.edu/digestive-health/non-celiac-gluten-sensitivity

Yes I cut gluten casein and soy in the early years of my illness (around 15 years ago). Mcas causes more traditional allergy symptoms in me (itching, burning of mouth and lips, swelling of lips, hives and most terrifying, constriction of my throat). I can now only eat blackberries, watermelon, grass fed beef, cucumbers, and Napa. Even those sometimes cause problems. I never thought I’d long for the time my only food issues were gluten casein and soy along with some nuts.

I’m not sure medically, but it think you can have gluten intolerance without celiac. That’s what I considers myself for years. My colonoscopy and endoscopy were fine when I went off gluten.

Yes that’s all I can eat snd I recently had a week bout where I lost I pounds and had to subsist on mostly small amounts of blackberries for the week. It was horrible. I started losing feeling in my hands and arms by the end. I’ve lost around 30 pounds total I think this year because of starvation during these bad mcas times. It’s basically why I’ve been terrified I might die this year. It’s actually what made a paranoid introvert like me scared enough to start posting in this and other forums begging for help.

Bailey - How do you survive on such a small amount of food? It seems there is no way you are getting enough nutrients through your diet. No wonder you've lost so much weight. And it's good to see you are posting looking for help.

Is there no route you can take with this? Doctors have been of no help (which wouldn't surprise me). This is not meant to make you more nervous. It's to see if others can also make comments with helpful suggestions. Not sure of your finances, but is there any chance you can see an LLMD? Have you tested positive for Lyme?

dcd - I had same tests as you and same results. Always shows gastritis, but I'm wondering if the gastritis could be tied to vagus nerve problems? Is your stomach a lot better now? I would go ketogenic but struggle to find enough good fats to use. Can't use much avocado, cheese, minimal nuts and seeds, or much meat because of kidneys. What the hell is there left?

Spero Clinic getting closer for you.

I have " non-celiacs gluten sensitivity". Of course it prob goes by many names.

My Leap MRT "170 North American common foods version" food/blood, cytokine test showed this. And I dont have Celiac per its specific antibody test.

It only makes sense that "leaky gut" will make Gluten sensitivity worse, bigger chunks in your blood= more targets for your immune system.

Ive said this many times- Going 100% GF stabilized my ever increasing need for more thyroid med. My ten year old thyroid nodule also dissolved per imaging.

Nothing surprises me to what gluten might do to certain bodies. I could fill up the Good Year blimp after eating gluten years ago.

A Dr recently mentioned trying gluten again......I'm chicken I'll erase the healing.

GF did not do much for muscle tension though.

RW, how about trying a fast?

https://www.healingwell.com/community/default.aspx?f=30&m=4252501

It's quite common to get the recommendation to remove all gluten and dairy products and to reduce sugar a lot. That was what I started with when I had my first health practitioner. I do eat cheese and low lactose butter now without noticing any problems.

Right, dairy, sugar and gluten seem to be the big ones that are always recommended. But I guess I just didnt realize how strong the reactions are. I think that most people, myself included, seem to think about these in terms of intolerances (inability to digest lactose leads to bloating, for example), and allergies (histamine responses), resulting in a vague increase in inflammation.

But a sensitivity is just a totally different animal. These can be real, antibody driven, autoimmune diseases that have hugely destructive consequences on the nervous system.

For example, I've detailed how after coming off this diet and eating gluten, I almost feinted. That sensitivity was there my whole life. My WBC has been surpressed my whole life, yet it seems to rise every time I come off gluten and go ketogenic. That's more than a "stay away from dairy because you might be intolerant". That's straight up immune suppression and autoimmunity. I guess I just didnt realize the magnitude of the effect.

And to your point about not noticing any effect. These sensitivities are not like allergies. You often dont notice them immediately. It can be delayed for days. In addition, you may not get stomach issues. It can be purely neurological, which you could attribute to lyme or something else. So there's no way to know. In addition, as I mentioned, I lived with this my whole life and had no idea. It wasnt until I stopped eating it, and then restarted, that it hit me like a mack truck. As if my body had just stopped sounding the alarm because I ingested it regularly, but after 5 months of not being exposed, the alarm went off again when I ate it.

Post Edited (dcd2103) : 7/29/2021 7:52:45 AM (GMT-6)

Good point. I'm glad youre strong enough now. Thats a good way to put it. Gives me hope that once i heal my microbiome and gut lining i too can get there! thank you for that

I have re-introduced more food in limited quantities and I can tolerate them easier now after being off them for a couple years.

Dairy is a non issue now, but im not going to indulge in animal milk of any type since I like the fake almond milk more. Nice to have cheese and milk based yogurt again.

Some fodmaps have no reaction anymore either- but fodmaps activate SIBO with me so Im not going to "indulge"in them. A little here and there...ok.

I have learned to avoid gluten so much that I can easily eat around it - unless going to a community social event restaurant ect......(which I rarely do anymore anyway). My friends and family are finally "trained"(!). Since gluten has more of a long term affect on me (proven with tests, not immediate so much), I cant really take the chance to re-introduce it, as it might still affect me for a long time after (months).

Post Edited (astroman) : 7/29/2021 11:59:42 AM (GMT-6)