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After 7 Years, I Think I Got It


richarda83

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richarda83 Newbie

So after 7 years of going to doctor to specialists to surgeon, somehow I dont know how i missed this. As I am sure many of you have experienced, in your pursuit to discover the cause of your ailments, you get very excited when you THINK you found something, and then you look silly. At many points I have convinced myself that I have AIDs, lupus, sinusitis, gastritis, in need of lymph gland cleansing, had a larger than normal lymph node removed from my neck, had my deviated septum fixed to clear my sinuses, and rounds of antibiotics, antacids, anti fungal, etc.etc.

So fastforward to today, after NUMEROUS jobs, dropping out of college, failed relationships, and a quality of life my 90 year old grandman would feel sorry for, I believe I have found my ailment. I am willing to look silly, because never before have I realised that after I ate a piece of bread the pain in my stomach, irritability, eyes watering, hands and cold and whole body pretty much freezing, that I could be allergic to gluten. So i googled every symptom I suffer from and continued it with celiac disease and COUNTLESS search results came back. I have swollen lymph nodes that were biopsied non cancerous that have fluctuated in size minimally but emit sharp pains via the stomach. I have had sharp pains throughout my body, foggyness in my head, depression, SEVERE anxiety, hair loss, and paleness. I did have allergy testing done but I dont believe I ever had a gluten test done, and by the looks of it, a negative test is meaningless. All I know is after I ate that piece of plane bread today on an empty stomach, I felt like crap, and still feel tired. I just wanted to say to everyone that while I will not confirm my diagnosis until it is professionally given, I am very quite certain I will be a future member. While I do not look forward to a restricted diet for the rest of my life, I would give anything to finally end the 7 year misery that I have endured. I will be going in for testing tomorrow, and I actually hope I get the answer im looking for. Thanks!


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Bubba's Mom Enthusiast

It sure looks like you might be one of us?

Good luck with your testing. I hope you get some answers.

Be aware that 20-30% of us test negative in our blood work, but do in fact, have Celiac. There's also non Celiac gluten intolerance, so once your testing is done try gluten-free 100% and see how you do?

kittty Contributor

This sounds cruel, but I hope you do test positive for celiac. It's just incredible to have answers, after years of beating your head against a wall. I was also at the doctors office constantly, getting no solutions, being sent to random specialists, and being prescribed random medications with no relief. I still don't feel completely well five months later, but I feel so much better! Nothing has ever made me feel better before, and it's a long road of recovery ahead, but making progress feels awesome! I hope you start feeling better soon, and especially hope you get some relief for that anxiety - that symptom is my nemesis. I learned to deal with the pain, the diarrhea, the brain fog, but I NEVER could learn to handle the anxiety.

Good luck!

GFinDC Veteran

HI,

It sounds lie you could be one of us. Do get all the testing done that you want before going gluten-free. The tests will not work if you have stoped eating gluten before hand.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

Dessert thread

Easy yummy bread in minutes

How bad is cheating?

Short temper thread

Non celiac wheat sensitivity article

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    • Scott Adams
      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.
    • Scott Adams
      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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