Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

I Guess I Should Be Tested...or?

Kottemamman

Recommended Posts

Kottemamman Apprentice
Kottemamman
Posted

Hi guys,

just found my way here due to my doctor

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

Celiac.com Sponsor (A8-M):


mftnchn Explorer
mftnchn
Posted

I am glad that your doctor is picking this up! Stay tuned here, there are a lot of people with similar experiences.

Sounds like the whole celiac blood panel wasn't done? Also some people have all negative blood work and positive biopsies.

Since you are still eating gluten and still managing ok it sounds like, if it was me, I'd go ahead and continue to eat gluten, make sure I have had all the blood tests, and also a biopsy. I'd make sure that these are done by people with good experience in this particular disease.

Then if it was me, even if those tests were negative, I would give the diet a six month trial (being very strict) to see if there was any signs of improvement.

I've learned a lot on this site, and you will too!

Guest j_mommy
Guest j_mommy
Posted

When I went in to see my GI the first time and she told me it could be celiac and explained what it was...I couldn't see the connection between what I ate and the disease either! After all that had been my way of life for as long as I remember. But then I started keeping a food journal and made notes on it about sypmtoms! Let me tell you there was a connection. The weekend before she called and said I tested positive I had a big stake of pancakes and the WHOLE next day I was alternating between bed and bathroom. and I realized the connection.

But I notice a huge improvment now that I'm gluten-free!!! I fell a TON better!

I would definetly get the celiac panel done...atleast then you'd know for sure!

Kottemamman Apprentice
Kottemamman
Posted
  • Author

Hi again,

no, the whole celiac panel was not done (I realize that now after reading a lot on this forum). And obviously my doctor does not trust it anyway, as he still suspects celiac disease. I am goign back to the doctor tomorrow morning, and then we

nora-n Rookie
nora-n
Posted

Hi

I am in Norway and hypothyroid too. Daughter has autoimmune thyroid problems too, both hypo and hyper. Her antibodies went down after trying gluten-free!

She has a diagnoisis now in spite of both negative biopsies and blood tests, but she did test positive to lactalbulmin antibodies (=milk) and she does not toerate even traces of milk or gluten. I react likewise but I did not manage to get a diagnosis. Different doctors.....

nora

norway

Nancym Enthusiast
Nancym
Posted

Most autoimmune diseases are connected to Celiac as well. There's a high percentage of people without total villious atrophy that will test negative to ttg and ema. And there's a high percentage of people that are negative on biopsy that do well on the diet. IMHO the diet should be tried regardless of testing and you should go on that result.

Kottemamman Apprentice
Kottemamman
Posted
  • Author

Hi all and thanks for answers and support!

Just came back from the doctor (the one who withdraw the B12 and zinc substitution). My B12 has sunk from 380 to 280 in two months and zinc from 22 to 14. So now he has sent me for the whole celiac panel and we will be getting those result next week. I am pretty happy despite the results, as I have been claiming for a month that my levels are lower (without having any blood test done).

I am very tempted to go glutenfree and give it a try EVEN if the results come back negative. I found an article in Medline that showed that about 1/3 of all celiacs without TOTAL villous atrophy do not have any antibodies. Some have only one type of antibody too, so I now understand it

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

Celiac.com Sponsor (A8-M):


grey Explorer
grey
Posted

Hi,

I had a bad B12 deficiency for years that got progressively worse, even with supplementation by injection. When I was first tested for celiac four or five years ago, my ttg was negative - no antibodies, but very low B12. I was tested again this May, positive ttg and biopsy with total villous atrophy-definately Celiac! It's been there all along, I just had to get sicker to make it more visible.

(oh, and I never saw the connections with food either, until I was diagnosed and started paying attention, partly because everything hurts/reacts differently.)

Good luck, and I hope things work out for you.

grey

Hi all and thanks for answers and support!

Just came back from the doctor (the one who withdraw the B12 and zinc substitution). My B12 has sunk from 380 to 280 in two months and zinc from 22 to 14. So now he has sent me for the whole celiac panel and we will be getting those result next week. I am pretty happy despite the results, as I have been claiming for a month that my levels are lower (without having any blood test done).

I am very tempted to go glutenfree and give it a try EVEN if the results come back negative. I found an article in Medline that showed that about 1/3 of all celiacs without TOTAL villous atrophy do not have any antibodies. Some have only one type of antibody too, so I now understand it

Kottemamman Apprentice
Kottemamman
Posted
  • Author

I think I had better start a food diary while waiting on the lab results. Perhaps there is also a connection to my migraine?

Since I found my way here I realize that there are sooo many symptoms for celiac disease. I wonder if perhaps celiac is the answer to everything that Synthroid has not been able to solve.

So what do you think....?

* Hypothyreosis

*B12 deficiency

*Zinc deficiency (well, at least coming up when the effects of my previous 6 months substitution run out)

* Bad stomach (bloating, constipation, diarrhea, cramps, usually more painful than painless)

* Hair growing VERY slowly, about 0,5 cm/month ~0,2 inch/month (my hair dresser thinks this is very very slow compared to how much it used to grow in the past years. We are then talking about 1 inch/month)

*Migraine (seems to be connected also to B12, the lower the B12-the more migraine. At least I can see a connection here, true or false)

*Dizzy (Almost always, the world never stops spinning really...)

*Nausea (when my stomach goes really bad)

*Tired, not able to run/train as I used to.

*Muscle pain. Stiff muscles (regular patient at the chiropractor

grey Explorer
grey
Posted

Kottemamman,

I've been flat out told I was a hypochondriac by doctors, or just depressed. I would definately write EVERYTHING down. Food diary and everything else - even if it seems completely minor, because you are probably used to it.

I'm on a daily preventative for migraines, with a triptan for breakthroughs, and was already eating a trigger-avoidance diet (no caffeine, msg, most preservatives, most alcohol, chocolate). Still having many many migraines.

The B12 deficiecy and migraines + GI led my doctor to test me for celiac, and this time, definately positive.

I also had a lot of your other symptoms except the fractures & thyroid, but those are definitely common with celiacs. I also had a lot of nervous system symptoms connected to malabsorption of various things.

keep us posted - it sounds at least like you have a good md - and remember that celiac is multisystemic. So, chances are good that if you have it (and it sounds v. plausible) that it's not that you're a hypochondriac, but the disease is hitting you on many, many fronts at once.

Kottemamman Apprentice
Kottemamman
Posted
  • Author

Thanks Grey, it is really nice to know that there are other people with the same kind of symptoms...It kind of makes life a little bit easier to know that you are not alone! :-)

I do feel like a hypochondriac, but I also know realize that the chain of symptoms does make sense if you consider an auto-immune attack on the whole body. I am happy the blood samples I have left so far have supported it. The only problem right now is that my doctor thinks that the celiac blood samples will catch every celiac patient, and that you only need to confirm it with biopsies. I really need to take him out of this, as he is a very nice caring doctor (as we all know there aren

Kottemamman Apprentice
Kottemamman
Posted
  • Author

Seems I am on the right track! Just found out thru a relative that my mother (who I don

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      129,981
    • Most Online (within 30 mins)
      7,748
    jennifergodshalk
    Newest Member
    jennifergodshalk
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Finally got in to doctor to get my referral and I lucked out and got into Gastro the same day - question about different transglutaminase results

      By Scott Adams · Posted

      It sounds like your gastroenterologist is becoming increasingly confident that celiac disease is the likely diagnosis based on both your older and newer lab results. Her suggestion to call each Monday for possible cancellations is actually a great strategy—especially given how long the wait is until your August 29th appointment. It’s also a good sign that she’s advocating for you to be seen sooner, which shows she’s taking your case seriously. The fact that some labs might not have been drawn yet due to overlap with your functional health doctor’s upcoming testing adds a layer of confusion, but that’s unfortunately common when multiple providers are involved. Hopefully, the GI’s remaining labs will still get processed, or she can reorder them if needed. As for the colonoscopy prep, it’s totally understandable that you're dreading it—many people rank it among the least pleasant medical experiences. You’re definitely not alone in preferring the pill prep option over the liquid kind, especially if you don’t drink Gatorade and had a rough experience with Miralax in the past. Hopefully, your doctor will approve the pill form, especially since you’ve tolerated other options poorly before. Fortunately, the upper endoscopy doesn’t require any bowel prep—just fasting, usually starting the night before—so that part should be easier to handle. It’s great that you’re already trying to boost your gluten intake, but yes, tracking gluten content can be surprisingly tricky. You’re right that the general rule for wheat-based products is to multiply the protein content by about 0.75 to estimate the gluten content. That means foods like oyster crackers, while convenient, may not pack enough gluten to help reach the recommended daily goal of around 10 grams before biopsy. It’s helpful that you caught that early, and switching to more gluten-dense foods like regular wheat bread, pasta, or wheat cereals might make it easier to hit your target. It’s not easy eating more gluten when you’re trying to manage symptoms or just not used to it, but doing so can make a big difference in ensuring your biopsies are accurate. You’re on the right track—hopefully with a little luck, you’ll get a cancellation and be seen sooner.
    • cristiana
      Worried about being isolated

      By cristiana · Posted

      Thanks for sharing that film, @trents.  I am not sure how I missed that film as I see it is a few years old, but it is very good.  I think you should be fine if you take your own packed lunch and eat it from your own lunchbox etc.  Might be worth doing a lunchtime recce to see how cramped the room is before making a decision - for all you know, there may be other people  there who don't eat gluten?
    • cameo674
      Finally got in to doctor to get my referral and I lucked out and got into Gastro the same day - question about different transglutaminase results

      By cameo674 · Posted

      The GI doc messaged me this afternoon that she believes that the new blood work added to the old is definitely  looking like a celiac diagnosis is in my future.  She wants to me to call into scheduling each Monday to see if I can get my August 29th appointment moved up due to cancellations.  I have never had a doctor recommend that.  She also said there were additional labs that she requested still out that have not come back yet; so, they may have been missed drawing those since the functional health doctor has a whole slew of labs that I am suppose to be waiting until August 27th to do. I am still waiting to hear on whether or not she will allow me to do pill prep versus the typical gatorade prep that I did 8 years ago for that colonoscopy.  I do not drink gatorade to begin with and that miralax prep kept me in the bathroom up until we drove to the procedure.  My younger brother said the pill form was fairly easy when the liquid form is hard to swallow. Colonoscopy prep is definitely close to number one on the list of things I never want to experience again if I could avoid it.  Number one is a different medication that caused severe cramping that had me in tears until it wore off.  Never having had an endoscopy, I have no idea of what that prep is like, but it cannot be worse right? I started munching on oyster crackers last night.  It is shocking how filling they are.  I just read that I need to pay attention to the protein content of the wheat bread product or I will miss the gluten goal of 10 g per day prior to testing.  The post said that I should look at the protein and multiple that number by .75 if it is a wheat flour product to see how much gluten is in it.  No more oyster crackers for me.  I would have to eat 10 oz bag everyday to meet my goal.  not going to happen.
    • Alibu
      Latent celiac, need to go gluten free, advice on kitchen "reset?"

      By Alibu · Posted

      Well, I've made if from the pre-diagnosis forum to here!  I've been diagnosed with "latent" or "potential" celiac and my doctor has suggested me to go gluten-free before my appointment with him in October (first available, LOL).  My ttg-iga was 152, my EMA was positive, I have the gene, but my biopsy was negative (and he took 12 samples), so it makes sense to go gluten free to see if I improve. I know the basics - I can find lists of things to avoid, I know about hidden dangers, etc. all of that.  Where I'm struggling is just STARTING.  I need to go shopping and stock up on some staples.  My goal is to not try to find gluten-free alternatives, but to focus on naturally gluten-free foods like proteins, veggies, fruits, and carbs like potatoes and rice.  However, the rest of the household will not be gluten-free, which is fine, I don't want them to for various reasons.  But I have SO much food in my house in the pantry and fridge and cabinets, and it feels like I need to get rid of a lot in order for me to start fresh, but at the same time, I can't get rid of everything. I guess it's just feeling overwhelming and I've never given up gluten before so this is going to be a huge shift for me and I feel like I need SPACE, but I can't quite have that. Any advice on just getting started and organizing myself would be great!  
    • Scott Adams
      Finally got in to doctor to get my referral and I lucked out and got into Gastro the same day - question about different transglutaminase results

      By Scott Adams · Posted

      It’s great that you were finally able to see a gastroenterologist—and even luckier to get in the same day as your referral! It sounds like your GI is taking a very thorough approach, which is reassuring given your complex symptoms and history. The confusion around your different tissue transglutaminase (tTG) antibody results is understandable. The variation between your December and June labs may be due to multiple factors, including differences in the lab performing the test (Quest vs. Mayo Clinic), the specific assay used, and the amount of gluten you had been consuming before each test. Antibody levels can drop significantly when gluten is reduced or eliminated from the diet, even partially, which might explain why your recent tTG IgA was now negative and your tTG IgG was borderline high. That’s likely why your GI mentioned it was “usually the reverse”—typically, tTG IgA is more commonly elevated in confirmed celiac, not IgG alone, especially when IgA levels are sufficient, as yours are. Your gene testing confirms that you carry HLA types (DQ2.2 most likely) that are permissive for celiac disease, meaning you can develop it, but not everyone with these genes will. These genes don’t explain why your symptoms are milder or different from others with celiac—many people have so-called "silent" or atypical presentations like yours, with issues like long-term heartburn, loose stools, nutrient intolerances, or just gradually adapting to symptoms over time. It’s not uncommon to assume these symptoms are just aging, medication side effects, or lifestyle-related until someone finally connects the dots. It’s a good thing your daughter advocated for you to be tested—many cases are missed for years because they don’t follow the “textbook” presentation. As for the immunoglobulin tests, your doctor likely ordered those to ensure your immune system is functioning normally, particularly your IgA level, since a deficiency can cause false-negative celiac blood tests. Since your IgA level is normal, your tTG IgA test should be reliable (assuming adequate gluten intake), but again, if you weren't eating enough gluten, that could explain the lower antibody levels now. The comprehensive metabolic panel and negative stool parasite results are additional pieces ruling out other causes of your symptoms, like infections or organ dysfunction. The upcoming endoscopy and colonoscopy should provide more definitive answers, especially with biopsies looking for celiac disease, eosinophilic esophagitis, and microscopic colitis. It’s completely valid to feel unsure about what you’re experiencing, especially when your symptoms have been lifelong or gradually worsening without being severe. You’re not alone—many adults with celiac or gluten-related disorders report subtle or chronic symptoms they’ve normalized. You’re doing the right thing by staying on gluten now through your procedure date in August. Try not to stress about reaching the full 6-slice equivalent each day, but do increase your gluten intake as much as tolerable (e.g., a couple of pieces of bread, pasta, crackers, etc.) to give the biopsy the best chance of detecting any damage. Good luck with your upcoming procedures—you’re closer than ever to answers and a clearer direction forward.
×
×
  • Create New...