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ragidyann

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ragidyann Rookie
ragidyann
Posted

Someone please help me. I have been told for years that I have IBS. And then I had polups removed and the GI sad I have diverticulosus. Stay away from nuts and stuff. What ever. They didnt hurt me. I always noticed that bread and pasta made me bloat. So I wouldnt eat them if i went out .And forget beer oh God that was the worst.So anyways, finally I got really sick no bm for 5 days i coulnt stand up to long. thought this is it im dead. went to a Dr and she ran some blood work and I was low in b12. I get shots now. nothing else was said about the pain and the bloating and the weakness. So I put myself on the gluten-free diet and within 3 days wow I wasnt bloated anymore. i couldnt believe it. so 6 months after that i go back to the doc for more blood work and i had been having leg cramps. i was still low in b12 and now d. she did a test for celiac and it was neg. i think a range of 3. Although I have been on the diet for 6 months she said that was ok. But does recomind the biopsy. I dont know what to do I feel really tired and and does it really matter if im staying on the diet? And why dont drs tell You what do do? Im so fed up I just want to cry. The only good thing is that im not crying from pain. Just frustraited.

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Wolicki Enthusiast
Wolicki
Posted

A biopsy after 6 months gluten free will not tell you anything. You probably have additional vitamin deficiencies. Can you ask your doc to run a vitamin panel?

GFinDC Veteran
GFinDC
Posted

If you have been gluten-free for 6 months don't waste your money on a biopsy or blood tests. You need to be actively eating gluten for 6 weeks or more for the blood antibodies to buildup to detectable levels. And the endoscopy is the same deal, probably not going to show anything at this point. At least that's what I've read. There is Enterolab testing which says it can work up to a year later. Your doc doesn't sound real familiar with celiac disease.

ragidyann Rookie
ragidyann
Posted
  • Author

Thanks. today was not a great day had d all morning and leg pain. does anyone else get leg pain or cramps in their calves or toes?

GFinDC Veteran
GFinDC
Posted

Thanks. today was not a great day had d all morning and leg pain. does anyone else get leg pain or cramps in their calves or toes?

There are people here who are told they have fibromyalgia or arthritis. So yeah, they get joint and muscle pain. My joints hurt from eating soy, so I don't do that no more. Celiac can cause malabsorption of vitamins and minerals. The resulting vitamin / mineral deficiencies have their own negative affects. It doesn't matter if you are taking vitamin pills or eating healthy food if your gut can't absorb it. your doc can test you for vitamin and mineral levels and that can help decide if there is something going on.

It sounds to me like you are not 100% totally gluten-free. Or you have another food intolerance in addition to gluten.

ragidyann Rookie
ragidyann
Posted
  • Author

Thanks i guess i can really watch what I eat even more. I dont do milk or soy we eat pretty healthy. I will try it though Thanks again for yalls help.

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      @Aretaeus Cappadocia and @Russ H thank you both for your helpful advice and information. I haven't seen a GI in years. They never helped me aside from my inital diagnosis. All other help has come from my own research, which is why I came here. I will be even more careful in the future. 
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      @nancydrewandtheceliacclue, you are welcome. After looking at this thread again, I would like to suggest that some of the other comments from @Russ H are worth following up on. The bird-bread may or may not be contributing to what you are experiencing, but it seems unlikely to be the whole story. If you have access to decent healthcare, I would write down your experiences and questions in outline form and bring this to your Dr. I suggest writing it down so you don't get distracted from telling the Dr everything you want to say while you have their attention.
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      @Aretaeus Cappadocia thank you for your reply and the link, that is very helpful to get a visual of just how small of an amount can cause a reaction. I know I am not consuming gluten or coming into contact with gluten from any other source. I will stop touching/tossing bread outside! My diet has not changed, and I do not have reactions to the things I am currently eating, which are few in number. My auto immune reaction just seems so severe. The abdominal pain is extreme. It takes a lot out of me. I guess I will be this way for the rest of my life if I ever happen to come into contact with gluten? I appreciate the help. 
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