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Can't Get A Diagnosis! Frustrated!


nu-to-no-glu

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ravenwoodglass Mentor
I just registered today. Hello everyone. I am getting tested for Celiacs and Crohn's soon. This is all pretty scary. I've been reading some posts and felt instantly sad for everyone. I'm 41 yrs old. No one in the family with celiacs ( that we know of). I was just wondering....Should my allergist or gastroenterologist test for this? I am so confused with everything. I went into the ER for throwing up for 6 wks from a sinus infection...3 days later...I might have celiacs or crohn's; have a cyst on my ovary; found spots on my lungs, and I am now on a very special gluten-free diet until I am officially diagnosed. Very overwhelming. Oh yea... I am vit b12 deficient. :( OK I am done pouting now. I will read more of your guy's stuff. Maybe I can get a handle on this. After a nap.....Thanks for listening.

The doctors putting you on the diet before they do any testing will cause the tests to be a false negative. However sometimes dietary response is the best test there is. If your doctors are going to test you need to go back on gluten until the tests are finished. Otherwise they will want you to do a lengthy gluten challege which can be a really nasty experience after we have been gluten free and started to heal.

  • 1 month later...

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csoctavia Newbie

hi,

I'm having the same problem with getting a doc on my side.After my son,I gained almost 40 lbs (I'm 5' and never wieghed over 100)and can not lose it.My doc keeps saying its stress or IBS.I had no control of bms and was sick after every meal. I saw on tv this diet were you give up 5 things,one was gluten.I finally started to feel better! After the 21 days I entered everything back into my diet and was fine till I ate gluten.I have been off it for almost 4 months and now my doc just tested me.He sent me to five other docs that all said I should get tested for it,but he didn't agree. Ofcouse the test came out neg.He wants me to eat gluten for 2 months then come back.I don't want to be that sick again!! My doc finally decided that he is not comfortable saying I have celiac disease but if not eating gluten helps,don't eat it.He just told me this yesterday.Don't know what to do next,but maybe I'll just stop eating gluten and say the heck w/docs!!My only advice to you is do what makes you feel good,I take fiber choice in the morn to help with making it to the bathroom,and for your baby,butt paste,you can get it at wal-mart,it will cure the diaper rash up almost immeditly,I swear by it!!Hope I helped,and if anyone has advice for me,please do,I'm pretty much just giving up on docs and living my life now,but if you know how to lose weight,help please!!

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      @HectorConvector, Please try adding Niacin to your supplements.  Low Niacin has a connection with suicidal ideation.  Been here, done that.  Niacin made me feel better mentally and physically.  Omega Three fats will help, too. For pain, Thiamine, B12 and, Pyridoxine B6 have been shown to have analgesic effects when taken together.  I know this works because I've cracked some vertebrae and this combination relieves the pain.  I was prescribed opioids, but couldn't function or poop, so... I can highly recommend these vitamins for pain relief.   I adopted a paleo diet, the Autoimmune Protocol Diet which has been shown to improve intestinal health.  Improving intestinal health improves mental health because of the gut brain-axis.  Important neurotransmitter Serotonin is made in the digestive system.   Please Read... Association between dietary niacin intake and suicidal ideation: mediating role of C-reactive protein https://pubmed.ncbi.nlm.nih.gov/40859220/ Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/
    • 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.
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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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