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I Think I Have It!


Donald

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Donald Newbie

I have always had stomach issues since childhood and I can relate to all the classic symptoms except weight loss. I have always battled my weight being anywhere between 10 to 30 lbs over weight.

I became vegan about a year ago and in doing so I was able to narrow down what food bothered my stomach. Well I began to suspect gluten issues then a couple weekends ago on a friday my wife and I had onion rings and fries, saturday I went to a cookout and had about 7 beers, sunday i had whole wheat pasta, and white bread...alot of it. Well Monday I was in the bathroom, and(sorry for the bluntness) it was water. So this continued for a couple days and then I discovered a web site about celiac. I went gluten free. That was a week ago and just today my stomach stopped cramping and I am beginning to be normal in the bathroom.

I am not thrilled about going to the doctor to go through testing. I thought I would just stick to a gluten free diet and see if things improve. All my life I have been plagued with fuzzy mind, occasional joint issues( of which I also had during this last attack), low energy etc. If this is indeed celiac, I would be thrilled to know that my issues have a name and that I may be able to control it and, basically, change my life!

Can anyone relate? Any suggestions??


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GlutenFreeManna Rising Star

Welcome! Just some advice, don't go gluten free until you have the testing done. You have to be consuming A LOT of gluten for the test results to be positive. If you are gluten free when you test it could be a false negative. If the diet helps it is really hard to go back to eating enough gluten (and making yourself sick in the process) for the tests. You can go gluten free the day your testing is done, you don't have to wait for the results to try the diet. Just try to get tests ASAP.

Skylark Collaborator

Why are you concerned about the testing?

Doctors encourage it because celiac tends to be accompanied with vitamin deficiencies, thyroid problems, and other autoimmune disorders. There is no treatment other than a gluten-free diet right now but there are treatments in clinical trials and they will only work for people who actually have celiac.

It's true there are false negatives, and I'm always one to encourage folks to try the diet once you've gotten at least the blood panel.

Also, I can completely understand your enthusiasm for finding something that might make you feel better. I do hope you have your answer, and that your health improves gluten-free.

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    • SusanJ
      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
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      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body.  See my blog.  Click on my name to go to my page, scroll to drop down menu "activities" and select blog.   So glad you're motivated to see the dietician!  We're always happy to help with questions.  Keep us posted on your progress! 
    • tiffanygosci
      Thank you for sharing all of this, Knitty Kitty! I did just want someone to share some commonality with. I did not know This one Deficiency was a thing and that it's common for Celiac Disease. It makes sense since this is a disorder that causes malabsorption. I will have to keep this in mind for my next appointments. You also just spurred me on to make that Dietician appointment. There's a lot of information online but I do need to see a professional. There is too much to juggle on my own with this condition.<3
    • RMJ
      I think your initial idea, eat gluten and be tested, was excellent. Now you have fear of that testing, but isn’t there also a fear each time you eat gluten that you’re injuring your body? Possibly affecting future fertility, bone health and more? Wouldn’t it be better to know for sure one way or the other? If you test negative, then you celebrate and get tested occasionally to make sure the tests don’t turn positive again. If you test positive, of course the recommendation from me and others is to stop gluten entirely.  But if you’re unable to convince yourself to do that, could a positive test at least convince you to minimize your gluten consumption?  Immune reactions are generally what is called dose response, the bigger the dose, the bigger the response (in this case, damage to your intestines and body). So while I am NOT saying you should eat any gluten with a positive test, the less the better.  
    • knitty kitty
      @Riley., Welcome to the forum, but don't do it!  Don't continue to eat gluten!  The health problems that will come if you continue to eat gluten are not worth it.  Problems may not show up for years, but the constant inflammation and nutritional losses will manifest eventually.  There's many of us oldsters on the forum who wish they'd been diagnosed as early.    Fertility problems, gallbladder removal, diabetes, osteoporosis and mental health challenges are future health issues you are toying with.   To dispel fear, learn more about what you are afraid of.  Be proactive.  Start or join a Celiac group in your area.  Learn about vitamins and nutrition.   Has your mother been checked for Celiac?  It's inherited.  She may be influencing you to eat gluten as a denial of her own symptoms.  Don't let friends and family sway you away from the gluten-free diet.  You know your path.  Stick to it.  Be brave. 
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