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6 posts in this topic

Here are my symptoms.

Seizures as a child

Anemic since birth

low ferritin

low B12

intestinal bleeds until I had my gastric bypass

severe stomach pains

told I had IBS

told I had fibromyalgia

canker sores

joint pain

red blotchy face

Get sick very easy

always tired

leg cramps

irritable

depression

headaches

can't sleep

I had both my gall bladder and appendix removed because of severe stomach pains. I have had an intestinal blockage and a gastric bypass also.

i was tested today for celiac disease by my request and will be going to Duke Hospital in NC on Thursday to see a Hematologist because of the anemia.

In your opinion does this sound like it could be celiac disease to you??

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Your symptoms fit, it's great you have been tested, you will soon know for sure. Celiac's are foten diagnosed with several other issues before the link to celiac is even thought about. I wish they would think of it first, rule it out, then go on...that would make things so much easier.

Good luck with your tests!

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Sounds like a good possibility. Do remember that AFTER you have done all the testing you desire to do that no matter what the results you should do a dietary trial of the diet to see if it helps. This should be done no matter what the test results say, there are many false negatives on testing so do give the diet a shot. Just be sure to wait until after testing is done to try as the gluten-free diet will impact the testing results. The diet will not effect test results for any disorders other than celiac so if they tell you the celiac tests were negative you have nothing to lose with the trial but the pain.

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Thank you. I have started to already look into a gluten free diet. Once I have been tested ,and if I am positive my son has been tested, then my family is going gluten free no matter what.

I just ate a bagel and 5 minutes after I ate I was in the bathroom. Since I started to pay attention to what I eat, I notice that this happens a lot after I eat foods that are high in gluten.

Should have my blood results back tomorrow or Friday.

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Just an FYI...only 30 percent of people with celiac get a positive test. Dr. Peter Green states this in CELIAC DISEASE A HIDDEN EPIDEMIC. Granted the book is twenty years old but I don't think things have changed much. People thought that Celiac disease was a rare disease but I think it's just rarely diagnosed. I recently went to a dinner and three people sitting at my table alone all had Celiac disease. What are the odds of that? I believe it's really gotten to epidemic proprotions but I guess that's another subject altogether.

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Just an FYI...only 30 percent of people with celiac get a positive test. Dr. Peter Green states this in CELIAC DISEASE A HIDDEN EPIDEMIC. Granted the book is twenty years old but I don't think things have changed much. People thought that Celiac disease was a rare disease but I think it's just rarely diagnosed. I recently went to a dinner and three people sitting at my table alone all had Celiac disease. What are the odds of that? I believe it's really gotten to epidemic proprotions but I guess that's another subject altogether.

FYI, The Op hasn't been on this forum in 3 years

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    • Did your doctor check for SIBO, H. pylori, ulcers, etc. when he was obtaining biopsies to check for celiac disease?  
    • Oh, and as I mentioned in my own post on pain, xanax. I swear. I tried it just to deal with the occasional panic I had at weird scary symptoms and clueless doctors. I am not a fan of long term use. But I recently found that .25 mg seems to aid with the neuropathic pain. It does not go away, but it helps. 
    • It does sound like a Glutening and you are just a few months into the diet.  It might help if you read our Newbie 101 thread under the "Coping" section.   Here is some information about rice milk: https://www.verywell.com/is-rice-dream-gluten-free-562354 Many, many celiacs are often lactose intolerant temorarily or permanently if you are naturally genetically inclined.  When I am glutened, I lose the ability to digest lactose for a while.   Salad?  Great but it can be rough on a sore gut!  Think soups, stews, easy-to-digest foods that you prepare yourself until you feel better.  Did your folks give you salad after a bout of flu?  Or did you stick with jello and broth?  I am intolerant still after three years to garlic and onions (the lactose resolved, thankfully).  You have a leaky gut (Google zonulin and Dr. Fasano who is a leading celiac researcher to verify that this is true) and that means you can become intolerant to anything (hopefully, just temporarily).   If you are 100% sure that you have had no access to gluten....did you eat out lately?.....then see your doctor.  Remember, celiac disease symptoms can change.  And here is the biggie.....it can take weeks, months or years to heal from celiac disease.  Two months in is nothing, really.  Why?  It takes time to figure out the diet and time for antibodies to come down.  celiac disease is an autoimmune disorder triggerEd by gluten.  once triggered it can go on and on damaging your gut especially with repeated glutenings (accidental or through cross contamination). I hope you feel better soon!  
    • I concur! I literally feel your pain as well. Like, at the moment, lol. Did you have an endo to see inflammation or damage? I am close to begging my GI for carafate or something to coat and protect. How about testing your antibodies to see if they are still rising? I read somewhere here rice milk may not be a good option.  Folks here have also suggested to me to stick with whole foods. Limit processed. Especially stuff that is not certified gluten-free, like chex. I think small amounts of gluten are in processed foids and can add up. I too reacted to lettuce the other day like I was ingesting glass. My sibling  had a food sensitivity panel done and it came back positive for a few things he had been eating a lot of. He can now eat them, but had to cut them out of his diet. Lettuce is probably on mine.  I have been drinking carrot and pomegranate juice,  dandelion root tea with hiney, aloe water, lots of squash, fish. Mild, no garlic, no onions or hot sauce. No coffee. It sucks.  Inflammation can tick off other organs, you mention a "Pain below". Not exactly sure which side, but certainly call your doc Monday. Sooner if the pain increases.
    • You should see a GI specialist before you go gluten free.  They should do a upper endoscopy to check for celiac damage.  Colonoscopy won't show anything related to celiac.  Also no you should not feel worse on gluten free, you should feel better.
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