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I'm So Confused

chucksusanandgrace

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chucksusanandgrace Rookie
chucksusanandgrace
Posted

I tried a gluten-free diet back in August. Apparently I went about it the wrong way because I jumped into all the processed gluten-free foods and I became constipated. I tried it for about 3.5 weeks and because I was having bloated stomac with constipation, I stopped.

Ever since I went off of it, I have had diareaha and or loose stools EVERYDAY. I also now have an elevated C Reactive Protein.

My gastroenterologist did an endoscopy and tested me for sprue and said I do not have celiac. but mild gastritis. I had a colonscopy two years ago and that was normal.

I feel hopeless. I have had a multitude of tests ran (MRI, MRA, ENG/EMG, endoscopy, colonoscopy, lumbar puncture, blood work, etc).

Have the following:

elevated anticardiolipin antibodies

elevated c reactive protein

low D, B1, B12, magnesium, iron

My Rheumatologist is suspecting some sort of autoimmune disease, but doesn't know which kind.

These are my symptoms:

numbness/tingling in the extremities

costocondritis (inflamation in my ribcage)

GERD

diareaha/loose stools

weakness

chronic fatigue

Should I try a gluten-free diet again? If so, who should I see a nutritionist?? To help ensure I am doing it the right way.

Thank you kindly.

Susan

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Dixiebell Contributor
Dixiebell
Posted

If you have had all the testing for celiac that you want to have, start the gluten-free diet. Try to eat meats, veggies, fruits and not so much processed foods. I would give it about three months and see if you notice any improvements.

The tests are not 100%, it is possible that you don't have enough damage to show up on the tests.

Emilushka Contributor
Emilushka
Posted

The anticardiolipin antibody is more classic for things like lupus. The C reactive protein just lets us know that you definitely have some inflammation going on, but it's not specific to anything. The rest of it could be from having all the diarrhea, but those deficiencies would make a lot of sense for Celiac, too.

Read up a bit more on specific foods on this site. There are lots of great suggestions and discussions, too. I agree that it's a good idea to try the gluten-free diet again for a couple months and see if you get any improvement, and definitely stay away from the processed foods at first. A lot of people have trouble with dairy initially, too.

Good luck!

cassP Contributor
cassP
Posted

did u say that your doc did an endoscopy to test for Celiac Sprue... but you didnt have any blood tests????? if i were you- i would go get a complete blood panel done for Celiac before you get back on gluten free.

after all that- you may just want to try gluten free anyways- false negatives are common for those with Celiac.

and ALSO- i would have your doc check for other autoimmune diseases! dont leave yourself guessing! these docs are so eager to just leave us guessing- and that's just not good enough. when i was 11-13, i had an elevated ANA, and a butterfly rash on my cheeks... they tested me for Lupus & Sjorgens... and never could diagnose me. and RATHER than test for OTHER autoimmune diseases- they just left it as a mystery. ff 25 years later- and now my Gi agrees with me that my ANA might have been early Celiac. all those years of mysterious health issues- some debilitating, that could have been avoided had i been diagnosed.

and keep in mind too- that there are many studies out there suggesting that Gluten can trigger other autoimmune diseases besides Celiac- so the gluten-free diet is definitely something you should explore

carecare Enthusiast
carecare
Posted

That is so interesting about the ANA being elevated when you were 11-13 and what your dr. says now. My husband is "undiagnosed" celiac but we pretty much know he's celiac. He's been gluten free for a year and feeling better than he's ever felt..no diarrhea or stomach pain any more. Anyway, my 16 yr old daughter also had an elevated ANA at that age. She was dealing with joint pain and stiffness frequently. They never diagnosed her with JRA because they weren't positive that's what she had. So it was just labeled Althralgia. Even had appointments with neurologists because she was getting electric shocking sensations in her arms too...and then the roof of her mouth. Makes me really wonder if she's celiac like her father (and possibly myself...been gluten free with notable positive changes in a week). The last couple of years for her have been good though...without any shocks or joint pains and she's not been gluten free. I think I will look into this more though...because I'd hate for her to have undiagnosed celiac and be damaging her system.

CC

did u say that your doc did an endoscopy to test for Celiac Sprue... but you didnt have any blood tests????? if i were you- i would go get a complete blood panel done for Celiac before you get back on gluten free.

after all that- you may just want to try gluten free anyways- false negatives are common for those with Celiac.

and ALSO- i would have your doc check for other autoimmune diseases! dont leave yourself guessing! these docs are so eager to just leave us guessing- and that's just not good enough. when i was 11-13, i had an elevated ANA, and a butterfly rash on my cheeks... they tested me for Lupus & Sjorgens... and never could diagnose me. and RATHER than test for OTHER autoimmune diseases- they just left it as a mystery. ff 25 years later- and now my Gi agrees with me that my ANA might have been early Celiac. all those years of mysterious health issues- some debilitating, that could have been avoided had i been diagnosed.

and keep in mind too- that there are many studies out there suggesting that Gluten can trigger other autoimmune diseases besides Celiac- so the gluten-free diet is definitely something you should explore

cassP Contributor
cassP
Posted

QUITE possible she's got celiac, but remember too- that testing will be innacurate if she's gluten free (then you gotta weigh if it's even worth it to eat the poison to get the test.... i, personally needed the diagnosis to go 100%)

ya, it's interesting & confusing- all of these autoimmune diseases- and also autism, schizophrenia , etc.... they often go together OR they get misdiagnosed for another one- because i cant tell you how many studies ive read where people with RA, LUPUS, MS, etc, etc, also have elevated TTG or Antigliadin... it's crazy. for example- my Aunt-in-law just got diagnosed with RA... now she's clearly RA... whether or not she's got celiac or not- I KNOW that she may find relief if she didnt consume gluten

good luck :)

chucksusanandgrace Rookie
chucksusanandgrace
Posted
  • Author

Thank you everyone for your replies. I am going to have to try the gluten-free diet again and see what happens.

And BTW, I didn't mention, but I did have an elevated ANA, but it has been negative the last year (strange really).

Thank you kindly.

Susan

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