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Is This Normal?

Pois

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Pois Newbie
Pois
Posted

Hi Im new to all this.

Ive had the test and all came back inconclusive. The blood test had a note on it that said i could be in the 2-3% of celiacs that dont have a high level of something. Or i could just be gluten intolerant. Im going to a dietician in 3 weeks (best appointment i could get) but at the moment im going a bit stir crazy!

I put myself on gluten free this year because i was fairly sure that was the problem and i was starting to feel great! (a little tired but my stomach felt normal for once) but then last saturday all my symptoms appeared again (rash on elbow, diarrhea, crying, bloating, feeling like acid was being poured through my intestines)

Im not sure if i accidentally ingested some gluten - ive been so careful and am pretty sure that i havent, however, if i did - is it normal for my symptoms to still be playing up a week later? (I know the longer youre gluten free usually the more severe your symptoms are if you accidentally ingest it - but i was only gluten free a month.) Or would this indicate another intolerance/problem?

Would be awesome if anyone could just let me know if this is kind of normal - though i know hardly any 2 cases seem to be the same! :rolleyes:

Thanks!

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Guest nini
Guest nini
Posted

yep it's normal! :P

francelajoie Explorer
francelajoie
Posted

Crying? Wow!

Was I diagnosed right? I never went through this stuff. Diareha, constipaton, and bloating is all I've ever benn through.

Man, I really feel bad for what you guys are all going through.

Pois Newbie
Pois
Posted
  • Author

how about symptoms actually being worse a week later? After i posted that i ended up with really bad diarrhea :angry: and my stomach has been kind of sore all week when i eat anything

(im just worried that it could be something else after i thought i had it sorted and had accepted it)

hez Enthusiast
hez
Posted

When I get glutened I do not feel "normal" for 3-4 weeks. I know everyone is different but this first two weeks suck and by the third I am feeling more normal. By week 4 I finally feel good. Hope you feel better soon.

Hez

jerseyangel Proficient
jerseyangel
Posted
Crying? Wow!

Was I diagnosed right? I never went through this stuff. Diareha, constipaton, and bloating is all I've ever benn through.

Man, I really feel bad for what you guys are all going through.

Depression and anxiety are two of the symptoms of Celiac. Not everyone gets them, but for those of us that do, crying is sometimes a part of it. :)

aikiducky Apprentice
aikiducky
Posted
how about symptoms actually being worse a week later? After i posted that i ended up with really bad diarrhea :angry: and my stomach has been kind of sore all week when i eat anything

(im just worried that it could be something else after i thought i had it sorted and had accepted it)

My symptoms are also worst about a week after being glutened. First I feel bad for a couple days, then I start to feel better, then a week from the glutening I feel the worst, and after that start to feel better quickly. Finally everything returns completely to normal three weeks after.

I used to think it had to be something else as well, until I started to notice this pattern of feeling the worst regularly one week after a glutening.

Pauliina

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4getgluten Rookie
4getgluten
Posted

Hang in there, this sounds normal to me too. For me, the healing process was like 2 steps forward, 1 step back. I'd be feeling really great, then bam, I'd feel bad again. Sometimes I could find what caused me to feel sick, sometimes I couldn't.

From my experience, as I began to heal, I also got more sensitive to gluten. Keep looking for hidden sources. I found gluten in my shampoo and my hand lotion. I also found that I had to be careful of cross contamination. Products that are gluten-free, but made at the same facility as gluten containing products, usually don't work for me.

It takes awhile to get used to the diet and to figure out what foods work for you. I've been gluten-free for almost a year now, and I can't believe how good I feel. It will get easier, I promise!

tiredofdoctors Enthusiast
tiredofdoctors
Posted

I think it's normal . . . I just got "glutened" because my husband had to go on a business trip unexpectedly in the middle of the day (get your stuff, fly out, the client is furious) -- but had eaten Penn Station subs for lunch. With lots of kissing prior to him leaving, and him not flossing beforehand . . . I ended up with increased symptoms this entire week. (I'm hoping that it is going to subside SOON!)

Pois Newbie
Pois
Posted
  • Author

Goodness! I never even thought of that! (i wonder if thats why im having more trouble the last couple of days....im sick of wondering all the time. I think too much!)

Im still kind of stressed that it could be something else cos the diarrhea and bloating dont seem to be going away and ive been super careful(though thankfully the heightened depression feelings have settled down and yesterday i had a crying free day woohoo!)

Pois Newbie
Pois
Posted
  • Author

and now its back! The crying came back today - after being ok all weekend, and the diarrhea hasnt stopped. Its at the point where ANYTHING makes me go. Im a bit of a mess, still wondering if its something else....

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • 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
      High DGP-A with normal IGA

      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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