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- Waterdance replied to Waterdance's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms4Diagnosed gluten allergy but not Celiac
Thank you for saying that. That doctor diagnosed me with IBS with no follow-up so the relationship is already concluded. If I pursue diagnosis further I'll request someone else. -
- Rejoicephd replied to Rejoicephd's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease17Struggling to get into a good pattern
Hey everyone. Thanks again for your suggestions. I wanted to give an update and ask for some follow-up suggestions from you all. So I did go through all of my food items and stopped eating things that were “gluten free” and switched over to the “certified gluten free” ones (the ones with the g symbol). I also stayed away from restaurants except once an... -
- trents replied to Waterdance's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms4Diagnosed gluten allergy but not Celiac
"My GI doctor ruled out gluten celiac entirely because I didn't have skin rash." Are you serious? The overwhelming majority of people with confirmed celiac disease do not have the rash. It's called dermatitis herpetiformis. It is found in only about 10-15% of those with celiac disease: https://www.celiac.ca/gluten-related-disorders/dermatitis-herpetiformis... -
- Waterdance replied to Waterdance's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms4
Diagnosed gluten allergy but not Celiac
Thank you so much for your informative reply. My GI doctor ruled out gluten celiac entirely because I didn't have skin rash. I had a histamine response to wheat and milk by scratch test by an allergist. I'm not always symptomatic but the older I get the worse it gets. I've found through trial and error that I can react to all grains. Buckwheat and...
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By Waterdance · Posted
Thank you for saying that. That doctor diagnosed me with IBS with no follow-up so the relationship is already concluded. If I pursue diagnosis further I'll request someone else. -
By Rejoicephd · Posted
Hey everyone. Thanks again for your suggestions. I wanted to give an update and ask for some follow-up suggestions from you all. So I did go through all of my food items and stopped eating things that were “gluten free” and switched over to the “certified gluten free” ones (the ones with the g symbol). I also stayed away from restaurants except once and there I ordered something raw vegan and gluten free hoping for the best. I also stayed away from oats and soy and dairy. I've also been increasing my vitamin B complex. I've been doing this for about 12 days and while I know that's not that long, I'm still getting sick. Sometimes having diarrhea. Sometimes getting headaches and having necklaces. Sometimes waking up feeling horrible brain fog. I did go to my GI doc and they did a blood test and found my TtG-IgA was in the negative range (and a lower number than I'd had before). I also had normal levels of CRP. My stool showed no elevation of calprotectin and no pathogens. My GI doc said the symptoms could be related to a gluten exposure or to IBS. I'm keeping a food diary to see if I can narrow down whats going on. I know I have good days and bad days and Im trying to isolate what makes a good day versus a bad day. Generally so far it looks like if it eat something super cautious like raw vegetables that I chopped myself into a salad and almonds, im fine but if I eat something more complex including, say, chicken and rice (even if packaged and certified gluten free or made by me with gluten free ingredients), it may not go so well. I may end up with either a headache, neck tension, brain fog, and/or diarrhea that day or the morning after. Any other thoughts or suggestions? I am planning to start tracking my foods again but I wanted to do it in more detail this time (maybe down to the ingredient level) so are there any common ingredients that celiacs have issues with that you all know of that I should track? I've got dairy, oats, soy, eggs, corn, peas, lentils on my “watch list”. Other things I should add? I'm hoping if I track for another two weeks I can maybe pin down some sensitivities. Appreciate the help and tips. Thank you so much!! -
"My GI doctor ruled out gluten celiac entirely because I didn't have skin rash." Are you serious? The overwhelming majority of people with confirmed celiac disease do not have the rash. It's called dermatitis herpetiformis. It is found in only about 10-15% of those with celiac disease: https://www.celiac.ca/gluten-related-disorders/dermatitis-herpetiformis/ If your GI doc is operating on that piece of misinformation, I would start looking for a new GI doc because I wouldn't trust him/her in general.
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By Waterdance · Posted
Thank you so much for your informative reply. My GI doctor ruled out gluten celiac entirely because I didn't have skin rash. I had a histamine response to wheat and milk by scratch test by an allergist. I'm not always symptomatic but the older I get the worse it gets. I've found through trial and error that I can react to all grains. Buckwheat and corn included. I tolerate some rice but I wouldn't want to eat it every day. Potato is pretty good for me but I can't eat it every day either. I compromise with squash. I tolerate it well. The Best I feel is while fasting. When I'm in pain and discomfort it's easy to fast even long term, it helps. The problem I'm having is I'm great with my diet for 3-6 months then I start to cheat again. When I don't get immediate symptoms I get this foolish false security. I react then go back to my diet. Rinse and repeat. I suppose discipline is my real issue. I'm very tired of perusing a diagnosis. The constant gaslighting and dismissal is exhausting. Thanks for your suggestion of the autoimmune protocol. I will give it a try. Perhaps the guidelines will help me to navigate better. Thanks again. -
By Scott Adams · Posted
This isn't the first potential celiac disease treatment in the pipeline that failed. There have been others...
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