I’m undiagnosed but my mom has CD


Hi everyone. So, question. I’m undiagnosed but my mom has CD, it took her to age 45 to be diagnosed after losing mass amounts of weight, you all know the story. Well I’m having the same reactions as her when she was my age (extreme, very very painful bloating, gas, headache, constipation) and I know it’s hereditary so the chance of me having it is very high. So knowing this I’ve been off gluten for a week and feel better than I have in months. Today I had a little piece of my boyfriends chicken because I couldn’t stand watching him anymore and got very nauseous on the drive home. My question is, should I bother getting tested if I have to eat gluten to be tested? My doctor told me I have to continue eating gluten for the test to be accurate but I don’t wanna eat it! Should I just say fuck it and stay gf? It would be nice to know if it’s CD or just a sensitivity I suppose so I know I don’t have to be so militant with CC. Do people with just a sensitivity have to worry about CC as well?

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Ashley 4 years 12 Answers 609 views 0

Answers ( 12 )

  1. I would personally get at least the blood test. Celiac can cause so many underlying issues, cancer being one of them. My dad just got diagnosed and he’s 50 and has already had thyroid cancer. You might show positive on the blood test if you’ve only been GF for a week but I would def talk to a doctor ASAP. Good luck. For your sake I hope you don’t have it. I would never wish this on anyone.

  2. Either way whether its a sensitivity or celiac, sounds like you should abstain from gluten. Testing will confirm but if not eating gluten makes you feel better than IMO thats all you need to know. You can request the blood test for the genetic markers. In my case I had all the markers so a biopsy was not necessary per my dr. He also told me that the biopsy can be false positive. If they snip a piece of your intestines thats not affected, youll get a negative result.

  3. With the current health insurance in this country, you may have problems down the road if Self- diagnosed. If a drug or other therapy comes online, without proper verification, insurance may not cover it. If you go GF before testing, it can quite difficult to get a definitive diagnosis.

  4. You have got to continue eating gluten containing foods, even more than before. That’s the only way you can be positive that the tests are telling the truth or not. I had to undertake a 6 month gluten challenge to have all my markers raised so we would have an official diagnosis!! Before that half my bloodwork was negative and the biopsy was not 100% possitive either.

  5. You have a higher likelihood because of symptoms and your mother already being DX’d. I would suggest getting a confirmation of celiac disease (blood/endoscopy) before going gluten free. Which mean start eating gluten again and schedule appointment ASAP, so you can start the gf diet again (since you know you feel better). If eating gluten free the test may show no immune response, even if you in fact have celiac disease. ****This is also dependent on the type of insurance you have. You should do what makes the most sense for you.

  6. You should get tested for many reasons, but predominantly because your doctor will not take your word for it over an official diagnosis. Your doctor needs to know what diseases you have. If you’re ever ill in future, and unable to find the cause, they will likely ask you to reintroduce gluten to rule out celiac anyway.

  7. As miserable as it is…. it’s better to jump back in now. I did the Whole30 then couldn’t add it back. The longer I’ve gone the harder it’s been to try. I get soooo sick. I’m wishing I never did it. My daughter has Celiac Disease and I’m pretty sure I now know where she got it but there is no way I could add the gluten back now. Official diagnosis would certainly help.

  8. If you’ve only been off gluten a week go back on but only equal to 2 slices of bread daily if you can tolerate that & get into a Gastro asap. When u call for the consult explain that as clearly as you did here and let them know you react violently as you’ve noticed.

  9. Yes. Get an official diagnosis. No ifs ands or buts.

  10. I’ve been gluten-free for 11 years. I was so sick all the time and no one knew why and no one offered tests. A naturopath put me on an exclusion diet and we figured out that gluten was causing my problems. Now, several people in my family have been diagnosed with Celiac’s, but I never did the test! Go back on now and get all the tests

  11. My suggestion. All people with close relatives need to be screened for CD. I recommend you work with a Specialist from one of the country’s Celiac Disease Centers. And if the labs are +, get scoped.

  12. The treatment is the same, regardless of diagnosis. I still watch for cross contamination. I know my limits by experience,

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