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Finally Making The Connection


MRM

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MRM Apprentice

hi everyone. i've been lurking for a few weeks and have learned so much from reading everyone else's experiences. since there's not an introduction board i guess this is the best place to start.

i suspect i've had life long issues with gluten/wheat. as a child i had chronic stomach aches. i spent a few years bouncing around from doctor to doctor and never finding the cause of my pain. i even had a trip to the ER with no known cause for my pain. by the time i was in second grade i was on Zantac daily. it didn't really help and i believe i eventually just got used to the pain. other signs i remember from my childhood include craving/eating dirt, reflux, severe dark circles aka "allergy shiners", keratosis pilaris, behavioral problems and chronic headaches. i would often wake in the middle of the night with severe headaches as a young child. my mother knew something was off and tried taking me off dairy. she had the right idea but the wrong trigger. i've also had chest pain and palpitations all my life. again, i've seen many doctors and none have found anything wrong with me.

it wasn't until about 2 years ago that i learned about Celiac Disease. my daughter was born in July 07. she had eczema and GI issues and under the guidance of my naturopath i started an elimination diet for her and i(i was breastfeeding at the time). we were off the top 8 allergens which included wheat/gluten. despite have a young baby and working full time i had never felt better in my life. about a year later we moved across country on very short notice i fell off the diet wagon. about 6 months later we had my daughter tested via IgG testing because we were still having issues. she showed a mild sensitivity to wheat but not gluten. we(daughter, son and i) all went back off wheat/gluten. again i felt great. i wasn't bloated every night, my allergies were tolerable. i didn't have near daily headaches. it was great but eventually we went back to eating wheat/gluten and have been for many months.

fast forward to this month. my son(age 6) has been having some stomach issues since he started school in the fall. this also happens to be when we started eating wheat again. we just had some stool samples sent out for him through our doctor. i'm not sure what they're screening for but our doctor knows i'm getting ready to take us all of gluten again. he's very petite for his age and has always been under the 25% for height and weight. he also has behavioral problems nearly identical to mine and allergy shiners. i will be asking to have him screened for celiac disease in the very near future.

while gearing up to go gluten free i've been able to avoid gluten for days at a time and have noticed that i react to wheat/gluten very quickly when i do have some. i get a headache almost instantly, waves of pressure in my head and sinuses and often get heart palpitations. i also have some severe fatigue and can barely get through the day without taking a nap with my daughter despite 7-9 hours of sleep at night. in the last month i've had allergy testing, both skin and blood, and a Celiac blood test. allergy testing was negative for wheat and the Celiac testing showed a reaction but within the normal levels. i guess my next step is to push for more blood work and a biopsy before i kick full swing into our gluten free diet. hopefully i will have some answers soon. thanks for reading all this.


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      Hi Florence, thank you for clarifying — and no worries at all about late-night writing. I appreciate you explaining that you’re specifically asking about gluten cross-reactivity, particularly the proposed immune cross-reaction between alpha-gliadin and certain non-gluten foods on a gluten-free diet. It’s an interesting and often confusing topic. The Vojdani & Tarash paper you mentioned did report antibody cross-reactivity in laboratory settings, which has led to a lot of discussion in the gluten-free community. However, it’s important to note that in-vitro antibody reactions (in a lab dish) don’t always translate into clinically meaningful reactions inside the human body. At this point, major celiac research centers generally conclude that true immune cross-reactivity to non-gluten foods in people with celiac disease hasn’t been clearly demonstrated in well-controlled human studies. That said, many individuals do report symptoms with foods like corn, dairy, oats, or others, and those reactions can absolutely be real — they just may involve different mechanisms, such as food intolerance, FODMAP sensitivity, separate immune responses, or individual gut permeability differences rather than molecular mimicry of gliadin specifically. If certain foods consistently trigger symptoms for you, keeping a structured food and symptom log and discussing it with a knowledgeable gastroenterologist or dietitian may help clarify patterns. It’s a nuanced area, and your question is thoughtful — we just have to separate what’s biologically plausible in theory from what’s been conclusively demonstrated in patients.
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      I’m really sorry you’re dealing with such intense burning pain right now. When symptoms get that overwhelming, it can feel unbearable and even trigger really dark thoughts, and that’s a sign of just how much you’ve been carrying — not a sign of weakness. It makes sense that you’d want to go back to a lower-carb, meat-and-vegetable approach if that’s helped reduce symptoms before; sometimes dialing things back to simple, whole foods can calm inflammation or gut irritation. At the same time, your safety and mental health matter just as much as the physical symptoms. If the suicidal thoughts are feeling strong or hard to control, please consider reaching out for immediate support — in the U.S., you can call or text 988 for the Suicide & Crisis Lifeline, or go to the nearest emergency room if you feel at risk. You don’t have to handle this alone. It may also be worth checking in with your doctor soon to review what’s changed and see if there are adjustments or treatments that could ease the burning pain more effectively. You deserve relief, and you deserve support while you figure this out.
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