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Ugh. Don't Know What's Wrong With Me

Zipity

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Zipity Newbie
Zipity
Posted

32 yo female. Since about high school I've had a "bad" stomach. Had upper GI barium swallow and it was fine. Was told I have IBS. Later in life I attributed it to anxiety. Went to the doc for that and I've been on meds pretty much constantly since (except when I was pregnant, and once when I decided I didn't want to "depend" on meds) I go through periods of feeling fine and feeling like crap. I posted on here one other time asking if its possible to just be sensitive to gluten? I seem like I don't always get sick when eating gluten, that's why I'm not sure what's going on. I know I would have to get a test for it to be definitive.

I seem like I can eat bread ok sometimes, sometimes not. Pasta out of a box makes me sick for days, but frozen tortellini with cheese in it doesn't. I had barley soup for lunch today and by dinner was having cramps, and really bad diarrhea, that was pale in color and floated. I don't know if this could be gluten or something else. Maybe it is IBS? I seem to have some neuro symptoms, but maybe they're unrelated? I just don't know what to do so I thought I would ask here. Thanks for reading :)

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mushroom Proficient
mushroom
Posted

Hi Zipity, and welome back. :)

You don't mention if you have ever had celiac testing in the past, but my personal opinion is that no one shouold ever be diagnosed with IBS until they have had celiac testing, and not even then :unsure: because it is just a descripton of symptoms, not a diagnosis of what is causing your symptoms. If you have had no testing, I would start there, and I would insist to be tested, not ask timidly :ph34r:

I was like you, sometimes coujld eat gluten just fine - in fact pizza used to be my comfort food. It often depends on what the gluten is consumed with how you react. But you do need to have the blood panel drawn, and the full panel including EMA and the new DGP, and not just the tTG, and make sure they do a total serum IgA so that we know you produce normal quanitities of IgA antibodies. I would suggest getting the testing done and report back to us with your results (always be sure to get a copy of all test results from your doctor). It is possible your test results could be negative, but that would not necessarily mean that you do not have a problem with gluten, just not diagnosable celiac at this time.

I hope you get to feeling better soon.

eatmeat4good Enthusiast
eatmeat4good
Posted

gosh yeah, sounds directly related to gluten to me. Try for Celiac testing, but yeah, your symptoms are totally consistent with Celiac/Gluten Intolerance. The neuro symptoms are consistent too. It is very common for symptoms to get worse and then better and sometimes you don't react at all. It is one of the reasons Celiac is so hard to diagnose. Keep considering whether gluten is a problem even if you test negative because that too is very common. The real proof is whether all of your symptoms go away on a strict gluten elimination for an extended period of time. I think you are on the right track to suspect it.

tina t Newbie
tina t
Posted

I have been having alot of the same problems, bloating and cramping after I eat. I can go from constiated to extreme diarhea in a matter of minutes. It seems to be alot more latly. By the way I'm 45 years old and this has been going on for awhile. I have been told its irritable bowel by the dr. I have not had any tests that I can remember (very bad memory also). My hair and nails are very brittle. I am anemic and take iron. I'm on depression meds. I take multi vitamins.I take vitamin D pills everyday. I have had joint pains since I was lil, I have had surgery when I was 11 months old for ruematoid arthritis. Ever since I was young I have had joint pain so bad I couldn't walk( I was told they were growing pains). I hurt my back in 1996 and have a cage in my back. I just want to know whats wrong with me and see if I can get this pain to stop!!! Help please.....

eatmeat4good Enthusiast
eatmeat4good
Posted

Oh my gosh Tina. If you just found us...keep reading. You have a lot of symptoms of Celiac/Gluten Intolerance too. My nails were brittle and cuticles cracked and bled all my life. One year gluten free and my nails are strong and I have to actually cut them now. That is just one of the benefits of being gluten free. Many other rude, annoying and life destroying symptoms have disappeared. They might for you too! Consider getting tested...or just go ahead and go gluten free. You might feel so much better for the first time in your life. I know I did.

GFinDC Veteran
GFinDC
Posted

Oh yeah, get the blood antibodie tests done. And then try the diet for 3 or more months regardless of what the tests say. The tests are not perfect and are not reliable if you are already eating gluten-free. So don't start the gluten-free diet until after the tests are done. I get constipated after a glutening and then get the big D after a few days. It is a common reaction although they vary a lot too.

Celiac can cause many different symptoms. Some of us get joint pain, others get thyroid symptoms, skin issues, etc, etc. Lots of possible symptoms but one cure. gluten-free diet.

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    • captaincrab55
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
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      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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