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Did You Diagnose Yourself?

Rita L

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Rita L Newbie
Rita L
Posted

This may have been asked before but I'm just curious. Did you suspect/diagnose yourself before your doctor suggested you may have Celiac? I did But then my mother had Celiac. I'm not a good "eater" since I don't get hungry until about 2pm so my husband is always nagging me, "Did you eat yet?" I finally said one day, "I feel better if I don't eat." Well that is when it clicked for me. I gave up the gluten for a week (and kept a food  diary for months after) and felt instant relief (esp from the acid reflux). Had the endoscopy and blood tests but since I did the blood test after giving up the gluten it showed negative for Celiac. But the endoscopy showed signs of scalloped edges to the villi.

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nvsmom Community Regular
nvsmom
Posted

I figured it out before my doctor did.  I first came across gluten when I was researching diets for my oldest son who is very mildly autistic.  He had occasional stomachaches and headaches so I suspected celiac disease but I wasn't sure because I have had that my entire life too... Wasn't that normal? A friend pointed out to me that I should get tested too but I dislike doctors (my past experiences have found them fairly useless unless I'm critical or need a prescription or surgery), and she kindly found out that the Biocard home test (tTG IgA) was on sale.  After some prodding I bought it and the positive result led me to the doctor who tested further and confirmed celiac disease for me.

 

Yep. I figured it out.  I first saw a doctor about stomachaches when I was around 8, so they missed it for a few decades.   :rolleyes: If Dr Google had been invented a bit sooner, I might have figured it out sooner. Three cheers for Dr Google!  LOL ;)

bartfull Rising Star
bartfull
Posted

My Mom also had celiac. She was diagnosed back in the 1980's. So when I started having problems I knew. I was in denial for a long time but when my psoriasis got so bad that I couldn't play guitar anymore (I run a music store!) I knew I had better do something. With no insurance I decided to skip testing and just went gluten-free. Like Mom, my psoriasis cleared up. My digestive issues (which were mild) cleared up. My insomnia which had been with me all my life cleared up. Lots of other little problems that I never would have associated with celiac cleared up.

 

Life is good! :D

SMRI Collaborator
SMRI
Posted

No, I was being looked at for something else and the dr added the Celiac testing and low and behold, I'm Celiac.

1desperateladysaved Proficient
1desperateladysaved
Posted

I thought of it first.  But since I had 5 children and claimed to be VERY tired sometimes, I didn't give the doctor a lot to go on.  My chiropractor said gluten when I told her every tissue in my body felt irritated, but didn't elaborate.  I went home and looked up gluten and thought it would explain my fatigue, infertility, and brain fog.  I cut gluten and felt that it certainly did make a difference.  Then I had a genetic test.

 

Dee

poneelovesyou Newbie
poneelovesyou
Posted

I figured out that I was at the very least, gluten sensitive, just by experimentally removing gluten from my diet. I found that everytime I cheated, I had horrible depression and anxiety follwing right after. Finally after happening over and over, I was 100% certain that the gluten was causing my life long sturggle with depression and anxiety. I did a bunch more research, and now I think I am actually a celiac. I had alot of the celiac symptoms as child, being incredibly underweight despite my huge appetite. I have started gaining weight like crazy since being on a gluten-free diet, because my body seems to be absorbing nutrients way more effectively than ever. So, I'm convinced I'm a celiac and didn't realize. I asked my doctor to test me, and she didn't really want to. Idk why.c

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    • Scott Adams
      Guinness, can you drink it?

      By Scott Adams · Posted

      This is why Daura Damm can be a sponsor here--at 3ppm or less it is gluten-free, and it's doubtful that anyone with celiac disease would ever have issues with such levels. Some people may be reacting to the yeast in the beer, but I seriously doubt that such beers could trigger elevated antibodies or villi damage--the science says such levels won't trigger celiac disease issues.  
    • Scott Adams
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      By Scott Adams · Posted

      I have to express some significant skepticism about the drclark cleansing programs you've mentioned. The claim that a specific, three-part parasite and organ cleanse is a universal solution for chronic health issues is a major red flag, as it oversimplifies the immense complexity of the human body and conditions like Celiac disease, which is an autoimmune disorder, not a parasite infection. Regarding your Celiac disease, the reaction you describe, while real to you, does not necessarily confirm a diagnosis; a delayed reaction is common with various digestive issues, and a definitive diagnosis typically requires specific blood tests and an intestinal biopsy, not just a provider's acceptance of symptoms. Furthermore, your mention of approaching mayors seems to misunderstand the role of local government versus federal policy; the deduction for gluten-free food is a federal tax law, and a mayor has no jurisdiction to implement widespread Celiac screening, which is a medical and public health decision far beyond a municipal leader's purview. It sounds like you are navigating a difficult health journey, but I would strongly advise consulting with qualified medical specialists and registered dietitians over relying on unverified online cleansing programs.
    • cristiana
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      When I have had what I think are episodes of this (I've never had a formal diagnosis for PF) it seems to be triggered by bloating caused by something I've eaten - a friend had an episode of this after eating too many apples, for me corn and rice cakes seemed to give me IBS and trigger this.  I am not a medical person but it seemed like the extra pressure down there perhaps added pressure to already sensitised pelvic and rectal muscles. Coeliacs can suffer from bloating when they are first diagnosed due to the inability to digest food properly.  Lactose for me caused a lot of bloating and when I came off it temporarily after diagnosis it helped reduce bloating.  Iron supplements and the timing of taking them also caused discomfort and I had to experiment a bit with type and timing before my gut felt comfortable.   Maybe something to think about?   Some coeliacs suffer from constipation - again, just a thought, but perhaps if you had issues with that it might be a contributor.
    • Rogol72
      Guinness, can you drink it?

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      At a family wedding in Italy last year I was drinking gluten free Peroni which was fine for me. From the Daura Damn website ... " Our guarantee less than 3ppm: each batch is analyzed and certified by the CSIC using the R5 Competitive ELISA test before hitting the market. This way, we ensure that its gluten content is always below 3ppm "
    • Mari
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      Hi jmartes, I brought up doTerra's website and see that they do have many supplements, offer  support and help. And using their organic products has been helpful. and yet you are not able to work enough to support yourself when, if you were healtht, you could work for another 20 years. It does not seem that they offer a program to follow and instead are offering supplements for your symptoms. This has helped you but you are not able to work very much.  The Programs I have seen  online usually have 3 parts. The first is a Parasite cleanse. The 2nd is the Kidney cleanse and the  3rd is a Liver cleanse and gallbladder cleanse. You need to doall these cleanses to have your whole body functioning well. I can only reccommend the program I gave you because that is the one I used and still do. (drclark.net)  When I see a newprovider and tell I have Celiacs and they look skeptical I tell them that when I am gluttoned the reaction happens 8 or more hours later with intestinal painful cramping followed by diarrhea. Providers are willing to accept tha I probably have Celiacs and are more likely order tests such as vitamin levels. Is this what happens if you eat only a small amount of Gluten? You mentioned going to Mayors. 20 years ago many Dr.s wanted to include a celiac screening as a standard test so that more people eould diagnosed and not become disabled. It did not happen but the Federal levgislature did pass a law so that Celiacs could claim deductions for the gluten free food they bought. What were you going to ask the Mayors to do?
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