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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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      Hi knitty kitty, Scott and all, Thanks for kind words and asking!I will def. talk about histamine intolerance  on my next visit to gastro doc. My doc.gastro says that lactose or casein is very unlikely to create marsh 3b histology like gluten in adults in intestines. (that was previous question for Scott) Regarding my last EGD the villy was OK so refractory is out of the question based on my talk with dr. If Scott is right and there are so many intolerance in food for celiac what is left to eat?? And now histamine? I mean what should i eat? Maybe gastritis is doing all this trouble? Thanks Kind regard    
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      dermatitis herpetiformis with all grains

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      @Richardo, I'm in the same boat as you! I can't handle certified gluten free oats at all. Quinoa is the worst, even when I soak it in water and then wash under the tap for 10 minutes ... I have a reaction. It must be an immune system reaction to the proteins in these gluten-free grains. 
    • trents
      dermatitis herpetiformis with all grains

      By trents · Posted

      We are all different and our immune systems are unique. I will say, however, that I have not gotten the impression as a moderator and reading hundreds and hundreds of posts on this forum over the years that a dermatitis herpetiformis outbreak caused by grains other than wheat, barley and rye is common. But perhaps it is more common than we have realized and it could be why it it is seems to be common that those who suffer from dermatitis herpetiformis struggle to keep it under control. Perhaps there are qualities found in all cereal grains besides gluten that are contributing factors. Also, have you tried a low iodine diet to see if it helps with your dermatitis herpetiformis? Reportedly, reducing iodine helps some folks afflicted with dermatitis herpetiformis.
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      dermatitis herpetiformis with all grains

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      Ok thanks Trents. I had the lesions biopsied and confirmed dermatitis herpetiformis, so I guess dermatitis herpetiformis can be associated with other grains not typically gluten. I appreciate your comment and I'll give Dr Osborne the benefit of the doubt because without him I would never have known of my grain intolerance and would still be suffering today. I simply never read anyone explain how grains could worsen dermatitis herpetiformis and I feel that information should be made much more readily available. Hey if someone tries going grain free and there's no improvement, no loss, however it drastically changed my life for the better and could at least be offered as a suggestion to sufferers from dermatitis herpetiformis. The other option is Dapsome and I wouldn't want anyone taking that chemical if there was a more natural solution. thanks again 
    • trents
      dermatitis herpetiformis with all grains

      By trents · Posted

      Welcome to the forum, @Richardo! We sometimes run across terms like "rice gluten", "corn gluten", and "oat gluten" but they are used informally and, technically, it is incorrect to speak of grains other than wheat, barley and rye as having gluten. Gluten is a protein with a specific structure found only in wheat, barley and rye. Other cereal grains contain proteins that are more or less similar in structure to gluten in some ways but are not actually gluten. Having said that, the proteins found in these other cereal grains are similar enough to gluten to possibly cause cross reactivity in some celiacs. Cross reactivity also happens with non cereal grain foods as well that have a protein structure similar to gluten. A prime example is dairy (the protein "casein"). Another example may be soy. Other foods can also cause cross reactivity for different reasons, such as microbial transglutaminase (aka, "meat glue") used commonly in pressed meat products. Just so you'll know, Dr. Osborne's claims have not received wide acceptance in the celiac community and are looked upon with skepticism by the medical and scientific community. Although he is a board certified nutritionist, his doctorates are actually in chiropractic medicine and pastoral science: https://www.drpeterosborne.com/about/dr-peter-osborne/ I am not sure Osborne has the training and background to address the chemical structure that defines gluten. I would encourage you to do some research on what gluten actually is. I have done this for myself and came away convinced that only wheat, barely and rye actually contain the protein gluten. I do not doubt your claims that you have breakouts of dermatitis herpetiformis from consuming these other grains. I am just contending it is not actually from gluten.
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