Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Major Gi Symptoms A Must To Be Considered Sensitive?

Michelle M...

Recommended Posts

Michelle M... Newbie
Michelle M...
Posted

Can someone have a gluten sensitivity if the ONLY GI symptoms are bloating and occasional gas-i-ness? My doc just suggested I get tested due to chronic anemia and b-12 deficiency (despite plenty of dietary consumption of both - thinking malabsorption), major fatigue, fogginess-cognitive issues, low mood and bloating (6 months pregnant looking by end of day even though naturally thin). Does this seem to fit the bill for gluten senstivity?

Thanks.

Michelle

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Sophiekins Rookie
Sophiekins
Posted

Nope, major GI symptoms are not a must to be considered for Celiac diagnosis. . .some of us never had GI symptoms until after we went gluten free (there is some debate over whether we actually never had them or simply didn't notice them because they were what we considered to be normal). In fact, many celiacs with cognitive problems due to gluten present without significant GI symptoms. Trust your doctor - get the blood panels run at the very least. (And unexplained anemia and b12 deficiency are classic celiac symptoms, with or without GI involvement).

tiredofdoctors Enthusiast
tiredofdoctors
Posted

No way!! I found out the hard way. My neurologist kept calling my gluten ataxia Celiac Disease. I had been given all three blood tests -- only had antigliadin antibodies (first "high", then "outrageously high"), as well as an endoscopy and colonoscopy. I wouldn't go gluten free because I kept saying "I DON'T have Celiac." It wasn't until my endocrinologist explained "gluten sensitivity" or "gluten intolerance" to me that I went gluten-free. In the meantime, the gluten was systematically destroying the cerebellum of my brain.

Nancym Enthusiast
Nancym
Posted

In my signature there's a link to "The Gluten File", click it and read up on the neurological symptoms. In fact, there are many ways that gluten can damage your brain, skin and perhaps other organs without every denting a villi in the process. So you'd end up with negative blood and biopsy but could definitely have other issues. That's why I think blood tests are so, so worthless.

Even a Open Original Shared Link.

GlutenWrangler Contributor
GlutenWrangler
Posted

Michelle,

Some of us have classic celiac disease with major GI symptoms. Others have no GI symptoms whatsoever. But no matter what the symptoms, none of us can tolerate gluten. In fact, the majority of celiacs and gluten sensitive people do not exhibit classic celiac symptoms. What you're feeling certainly corresponds with gluten intolerance. You're GI symptoms may not be major, but I'm sure you're feeling awful anyway. You should definitely get tested. It seems like you have a pretty smart doctor. I hope you feel better. Good luck.

-Brian

Michelle M... Newbie
Michelle M...
Posted
  • Author

Thanks to everyone for their thoughts and the links to information.

I will be doing one of the Enterolab gene tests as soon as it arrives. Not sure if this is best diagnostic tool or not but it's what the dr. ordered. If I learn this has been my problem (for as long as I can remember) I'll be very relieved -- I'm sure going gluten free is not easy or convenient but much preferred to constantly being told I just need Prozac and to eat better to raise my iron, b12 and vit d levels. Frustrating because I eat more meat than a caveman and drink more milk than a calve and always have. If it's not gluten, then I'll explore dairy next.

M.

rez Apprentice
rez
Posted

Wow! Your doctored ordered a test from Enterolab. What's the deal? Are they legit then, or not. Our pediatric GI basically laughed at our Enterolab paperwork and said he did his training in Texas and they NEVER ordered anything from Enterolab. We asked if he thought it was a hoax. He repeated, I trained in Texas and we NEVER, NEVER ordered anything from Enterolab. On the flip side, our GP said he though Enterolab was legit and it was started by a doc who's daughter has Celiac. I don't know what or who to believe.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Nancym Enthusiast
Nancym
Posted

Oh, I'd believe the sarcastic, flippant doctor. ;)

Michelle M... Newbie
Michelle M...
Posted
  • Author

No clue on the Enterolab being legit bit. The Dr. I'm working with seems pretty on the ball and committed to finding the "cause" of symptoms vs. just treating them. I trust her judgement and therefore will comply with her reco to get tested.

Rez, did your Enterolab paperwork show a positive result but you questioned it (or the Ped GI doc questioned it)?

Michelle

marciab Enthusiast
marciab
Posted

I had myoclonus, ataxia, severe fatigue, brain fog and pain that started back in 1990. The myoclonus ataxia were just eliminated last year by getting the gluten out of my diet.

I was diagnosed with CFIDS / FM and told I would have to live with it ... You are lucky to have such an enlightened doctor...

I only had mild IBS from 1975 - 2004, then in 2005 I developed severe digestive problems.

I have not been tested. Long story. My GP diagnosed me as gluten intolerant based on results last year...

Marcia

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Patiently Waiting to See Results

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would...
    2. trents
      - trents replied to Leeloff's topic in Gluten-Free Foods, Products, Shopping & Medications
      75

      How Come Gluten Didnt Bother Me In Italy

      You state in an earlier post that you don't have celiac disease. Here in this post you state you will "be doing another test". What will this test be looking for? What kind of celiac disease testing have you had done? If you have used a Entero Labs it sounds like you have had stool testing done for celiac disease which is not widely accepted as a valid celiac...
    3. Gigi2025
      - Gigi2025 replied to Leeloff's topic in Gluten-Free Foods, Products, Shopping & Medications
      75

      How Come Gluten Didnt Bother Me In Italy

      No, I've not been diagnosed as celiac. Despite Entero Labs being relocated to Switzerland/Greece, I'll be doing another test. After eating wheat products in Greece for 4 weeks, there wasn't any reaction. However, avoiding it here in the states. Thanks everyone for your responses.
    4. Rejoicephd
      - Rejoicephd replied to JulieRe's topic in Related Issues & Disorders
      7

      Oral thrush question

      Thank you @JulieRe so much for sharing this extra information. I'm so glad to hear you're feeling better and I hope it keeps moving in that direction. I feel I'm having so many lightbulb moments on this forum just interacting with others who have this condition. I also was diagnosed with gastric reflux maybe about 10 years ago. I was prescribed...
    5. catsrlife
      - catsrlife posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Patiently Waiting to See Results

      Back at the end of July I got this rash on both of my forearms. It started on my right and continued to the left. It was on the top and side. The rash has bumps that would pop with clear liquid if scratched. They would almost crystalize and scab up. They reminded me of chicken pox. They would scab for weeks and not heal much at all except for the blood clotting...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,897
    • Most Online (within 30 mins)
      7,748
    Sgp
    Newest Member
    Sgp
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
    • trents
      How Come Gluten Didnt Bother Me In Italy

      By trents · Posted

      You state in an earlier post that you don't have celiac disease. Here in this post you state you will "be doing another test". What will this test be looking for? What kind of celiac disease testing have you had done? If you have used a Entero Labs it sounds like you have had stool testing done for celiac disease which is not widely accepted as a valid celiac disease diagnostic testing method. Have you had blood antibody testing for celiac disease done and do you realize that for antibody testing to be valid you must have been eating generous amounts of gluten for a period of weeks/months? 
    • Gigi2025
      How Come Gluten Didnt Bother Me In Italy

      By Gigi2025 · Posted

      No, I've not been diagnosed as celiac.  Despite Entero Labs being relocated to Switzerland/Greece, I'll be doing another test. After eating wheat products in Greece for 4 weeks, there wasn't any reaction.  However, avoiding it here in the states.   Thanks everyone for your responses.  
    • Rejoicephd
      Oral thrush question

      By Rejoicephd · Posted

      Thank you @JulieRe so much for sharing this extra information. I'm so glad to hear you're feeling better and I hope it keeps moving in that direction. I feel I'm having so many lightbulb moments on this forum just interacting with others who have this condition. I also was diagnosed with gastric reflux maybe about 10 years ago. I was prescribed ranitidine for it several years back, which was working to reduce my gastric reflux symptoms but then the FDA took ranitidine off the shelves so I stopped taking it. I had a lot of ups and downs healthwise in and around that time (I suddenly gained 20 pounds, blood pressure went up, depression got worse, and I was diagnosed with OSA). At the time I attributed my change in symptoms to me taking on a new stressful job and didn't think much else about it. They did give me a replacement gastric reflux drug since ranitidine was off the shelves, but when I went on the CPAP for my OSA, the CPAP seemed to correct the gastric reflux problem so I haven't been on any gastric reflux drug treatment for years although I still do have to use a CPAP for my OSA. Anyway that's a long story but just to say… I always feel like I've had a sensitive stomach and had migraines my whole life (which I'm now attributing to having celiac and not knowing it) but I feel my health took a turn for much worse around 2019-2020 (and this decline started before I caught covid for the first time). So I am now wondering based on what you said, if that ranitidine i took could have contributed to the yeast overgrowth, and that the problem has just been worsening ever since. I have distinctly felt that I am dealing with something more than just stress and battling a more fundamental disease process here. I've basically been in and out of different doctor specialties for the past 5 years trying to figure out what's wrong with me. Finally being diagnosed with celiac one year ago, I thought I finally had THE answer but now as I'm still sick, I think it's one of a few answers and that maybe yeast overgrowth is another answer. For me as well, my vitamin deficiencies have persisted even after I went gluten-free (and my TTG antibody levels came down to measurably below the detectable limit on my last blood test). So this issue of not absorbing vitamins well is also something our cases have in common. I'm now working with a nutritionist and taking lots of vitamins and supplements to try and remedy that issue. I hope that you continue to see improvements in working with your naturopath on this. Keep us posted!
    • catsrlife
      Patiently Waiting to See Results

      By catsrlife · Posted

      Back at the end of July I got this rash on both of my forearms. It started on my right and continued to the left. It was on the top and side. The rash has bumps that would pop with clear liquid if scratched. They would almost crystalize and scab up. They reminded me of chicken pox. They would scab for weeks and not heal much at all except for the blood clotting. If the scab was scratched off, it would bleed and bleed until it scabbed up again. The skin has lost its pigment where the scabs are. I figured it was probably either the plant I had trimmed around the 15th or some reaction to the magnesium complex I was taking or an allergic reaction to the asthma meds I was on. I stopped the asthma meds and the magnesium. The rash seemed to get better but when I took the asthma meds it flared up again so I went to the urgent care as my doctor was unavailable. The UC doctor said it probably wasn't the meds and asked about my diet. I said I was strict keto. I usually am, but there is a story around this. I feel amazing on keto. When I eat sugar, wheat, and starchy veggies I feel horrible. Blood sugar goes up, IBS type symptoms, brain fog, etc. But I have a horrible addiction to carbs so I blow it sometimes and after Mom died in 2023, I fell off the wagon. No rashes, just weight gain. I finally went back on keto and then around that time had a piece of pizza (or so, it's hard to stop the carb rush.) So I was strict keto, off and on. She ignored that and prescribed some allergy meds. It didn't go away.  What was happening by then was that the rash was now on my upper elbows, both of them, on the back of my arms. It starts with a very itchy bump, spreads around it and sometimes just burns like crazy and other times just itches. Then it started on the sides of my knees on the oustide, a little bit down the sides of the calves. It's not as bad there as it is on my arms even though it comes and goes (and so does wheat in my diet.) I then got three tiny blisters on each hand, 3 on the insdie of my index finger on the right hand and 3 on the inside of middle finger of my left hand. There is still a little scab there even though it was two weeks ago. No more have appeared on the fingers. But right now the back of the arms above my elbows are starting to itch. At some point I started to think mites from the possum that was sneaking into our house but it's been 3 months and they would be dead already. It wouldn't be from humans because I don't go near any humans although I did take an Uber to the doctor and the bus back. Plus, it's symmetrical. It starts on one side and is almost identical on the other.  I did my DNA with Ancestry and MyHeritage. I don't have the HLA-DQ2 or HLA-DQ8. I do have HLA-DQ2.2. I took the blood test but it was negative. Then again, I don't eat wheat every day. I rarely eat it except for lately when I've been preparing for the blood test if I have to take it again. I don't like to. It makes my joints hurt, gives me brain fog, stomach problems, I sleep in the middle of the day, etc. I have a doctor appointment tomorrow. I hope that she will be more serious about this than the UC doctor was.  So I have no idea. With my luck they'll magically disappear before the doctor appointment. That's what happens with everything.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.