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Waller237

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Waller237 Newbie
Waller237
Posted

I was told 14 years ago that I "might" have celiac based on blood and endoscopy results. I went on the diet for 3 months and never felt better. I was very strict and followed it well. I returned to the dr. Telling him that I felt worse eating ruffage/salads/veggies and actually had worse symptoms. He tells me then I probably have IBS (very moderate damage to villi)

13 years later, I have had terrible headaches and migraines daily for 5 years. I'm always tired for no good reason. I have gas, nausea, and gastro issues. I just feel crappy all the time! I went to neurologist and asked him to do gluten test again. He did the "celiac test" and I scored an 81!!! They said anything less than 4 is negative. An 81?!?!? Went to gastroenterologist with test results and she said to do the endoscopy again to see for sure. During this 5 month lapse, I did the gluten diet again for 6 weeks with the same results. I felt worse and headaches were not better either.

What do I do?! Why doesn't the diet help? Can I have celiac and IBS?!?! I just want to feel well!!!!

Thank you:)

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kareng Grand Master
kareng
Posted

It sounds like you have Celiac disease but have never done the gluten-free diet for very long? The damage can take months or years to heal. 14 years of untreated celiac may never entirely clear everything up.

nvsmom Community Regular
nvsmom
Posted

I agree. You probably need to be gluten-free longer. Most people need 3-6 months before they see steady improvements. And do not forget that some people go through withdrawal in the first few weeks gluten-free, when they will feel worse before they get better.

Also, you may need to cut dairy from your diet. Many celiacs are lactose intolerant until they heal, and lactose intolerance can provide symptoms similar to celiac disease.

Best wishes. I hope you feel well on the gluten-free diet soon.

Waller237 Newbie
Waller237
Posted
  • Author

Thank you all for your advice. I was hoping that I had not given it enough time. But my dr. Said I should have started feeling better after 6 weeks. I also asked if after I begin to heal, will I begin to tolerate veggies better and she said no, probably not. I guess I'll get all my information from this site and not the dr. Endoscopy scheduled for June. Gluten free is so hard for me!!! I've been hoping this was all a mistake:( thank you for your help.

kareng Grand Master
kareng
Posted

Thank you all for your advice. I was hoping that I had not given it enough time. But my dr. Said I should have started feeling better after 6 weeks. I also asked if after I begin to heal, will I begin to tolerate veggies better and she said no, probably not. I guess I'll get all my information from this site and not the dr. Endoscopy scheduled for June. Gluten free is so hard for me!!! I've been hoping this was all a mistake:( thank you for your help.

You know you should be eating gluten to get an accurate endoscopy, right? I would hate for the doc to say you don't have Celiac because some of the damage has healed. Damage is usually not in all of the small intestine. It is " spotty". So, if they take 4 biopsies, and you have started to heal, it can be really hard to get a positive biopsy.

Waller237 Newbie
Waller237
Posted
  • Author

Yes. I do know I have to keep eating gluten. She said load up on breads, pasta, and pizza. So I will have to continue to eat the same way.. I did not know that damage was spotty. I wonder if that is what happened on my first endoscopy. There was damage in some biopsies but not others. I was 16 at the time and symptoms started after adult chicken pox. Good to know!!!

notme Experienced
notme
Posted

if your gut is damaged, you might not be able to digest raw fruits/veggies/salads.  i know i have just added a bunch of stuff back in and i have been on the gluten-free diet for nearly 4 years.  also, when you start eating gluten free again, take probiotics & digestive enzymes <will help with regularity & digestion)  keep a food journal to see what is giving you trouble and see if cutting said item out for awhile helps.  somebody said quit dairy and that is a good idea.  good luck :)

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