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Coping with Celiac Disease
Share stories, techniques, and information to help others deal with the disease and the gluten-free diet.
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- TerryinCO replied to TerryinCO's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease2Status Update...
Thank you for the information. I did order/receive GliadinX to have on hand in the event of suspected exposure. -
- Dc91 replied to Dc91's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms7Celiac or not?
Just had a letter through from the Celiac team, they’ve diagnosed me through my bloods, no endoscopy/biopsy needed. I guess I’ll be sticking around on this forum and I’m sure I’ll be back soon. thanks for all your help -
- Ryangf posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms0Do I really need to get a biopsy?
Hi everyone I’m somewhat new here- at least this is my first time posting. I have been having persistent stomach issues since July of 2024- so around 7 ish months I’ve been having issues. At first I thought it was just a bout of constipation because I had had that issues before but- it simply did not go away at first I went to urgent care for my ... -
- trents replied to Hauama's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms1Less than 10 parts per billion issues
I have no specific recommendations but I would suggest looking for products that are advertised as produced in a dedicated gluten-free facility. That should eliminate one possible route of cross contamination. It doesn't guarantee that none of the ingredients going into the product are totally gluten free but is should eliminate adding more CC to the mix...
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Thank you for the information. I did order/receive GliadinX to have on hand in the event of suspected exposure.
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Just had a letter through from the Celiac team, they’ve diagnosed me through my bloods, no endoscopy/biopsy needed. I guess I’ll be sticking around on this forum and I’m sure I’ll be back soon. thanks for all your help
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Hi everyone I’m somewhat new here- at least this is my first time posting. I have been having persistent stomach issues since July of 2024- so around 7 ish months I’ve been having issues. At first I thought it was just a bout of constipation because I had had that issues before but- it simply did not go away at first I went to urgent care for my bloating and stomach pain and constipation and they basically didn’t really check anything and just passed it off as constipation and gave me stool softeners. Then I started having joint pain and a sharp stinging sensation in my back that debilated me and urgent care passed it off as muscle spasms. Then I finally went to my primary care doctor and they put me on a lowfodmap diet- and that didn’t help…(I was still eating gluten product),then I told her that didn’t help and then she didn’t contact me for several weeks not even trying to pinpoint the cause of my discomfort. So I started doing my own research from reputable sites- and analyzed my symptoms. Then suddenly I started losing weight rapidly 23 pounds in a month to be exact and I had like pale yellowish stool. Then I started realizing maybe it was gluten that was irritating me and I cut it out and started feeling a little bit better but still had some discomfort. Then I contacted my doctor again for a blood test for it and it came back negative. But I still was worried at least if it could be anything else going on in my stomach though I was sure it was celiac disease. Then after me practically begging her to let me get an endoscopy eventhough she insisted I was fine- I choose a doctor to see that was not my primary care doctor to evaluate me and they recommended I get an endoscopy…and I had an endoscopy a few weeks later. That came back negative for celiac with my biopsy too and no other damages from my ultra sound I got or anything. So I was naturally extremely confused. So I started to feel like maybe I was over exaggerating. But then I started researching on endoscopies- and found out for a confirmed positive blood test and endoscopy I had to be CURRENTLY eating gluten something neither of my doctors notified me about nor the GI specialists. So I realized my doctor probably would not order me another endoscopy…and also I just decided do I really need to go through the pain of eating gluten again for an endoscopy- when I could just stop eating it? So I weighed it and at the moment I decided- I would not get an endoscopy and just be gluten free- and for a little bit- I was fine- then my stomach started hurting again- a few times could’ve been from cross contamination but I also saw that a lot of the gluten free products I was eating contained corn and I tested it and stopped eating corn products for a few days and felt better. So I also did research on corn and found that some people with celiac disease can respond negatively to corn because it has a protein in it similar to gluten. So I cut that out completely and felt better for a long time. Except for ocassional corn cross contaminations I felt fine- until recently where I think I may have had corn products a few times consistently- and not noticed despite my stomach upset because I had been dealing with stomach issues so long I thought it was the norm. Now for the past few days possibly because of the consistent corn exposure for the past month I’ve been having an upset and bloated stomach eventhough I stopped eating the corn- because I think (though studies are not sure on corn damaging celiacs stomach lining) corn may have been damaging my stomach lining again during that time- and I may be developing some new intolerances or conditions. I want to go get that checked out but I don’t want to be gaslighted by doctors again- cause it makes me feel crazy. And I’m also debating on whether or not I want to go through the pain and stomach damage again for 2-6 weeks to really confirm if I have celiac disease- and I’ve been even more reluctant because now I am in classes again and I have to be in class consistently standing up a lot (culinary class) for multiple hours on end and I don’t think me being fatigued and sick and in pain is going to be good for me during that time. Should I get an endoscopy to confirm if I have celiac disease again this time actually eating gluten up to that point- or should I just first try to figure out what intolerances I may have developed or other conditions via a doctor- or wait for a while until my stomach lining has repaired sufficiently or at least enough before getting an endoscopy and a blood test again at a time when I am not busy a year or so from now while maintaining a gluten free corn free diet until my endoscopy is booked and then I will begin eating gluten and corn up until the endoscopy? (Sorry I know that was a lot.)
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I have no specific recommendations but I would suggest looking for products that are advertised as produced in a dedicated gluten-free facility. That should eliminate one possible route of cross contamination. It doesn't guarantee that none of the ingredients going into the product are totally gluten free but is should eliminate adding more CC to the mix via processing machinery. One of the issues you may be experiencing is that testing has shown that a significant percentage of "Certified Gluten Free" products can test far in excess of 10ppm. There was an article appearing in this forum back last summer outlining the results of testing that showed this to be true. So, it may be somewhat of a pig in a poke when you buy this stuff, regardless of how it is billed. It may be safe for you if it actually fits within the stated requirements of it's billing.
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I can still have a reaction from “certified gluten free” products I don’t like having to use the eat and see what my body does approach are there really any purely gluten free products or do I just have to make all of my own food?
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