Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Can I Have Gluten Intolerance?
0

14 posts in this topic

Hi. Sorry for my English.

I had many strange symptoms for 6 years. Now I am 29. It begins with anxiety and ibs with diarhhea, but 4 years ago they become severe and many other symptoms added. They include:


1. Chronic fatigue

2. Brain fog, derealization

3. Anxiety

4. IBS-D

5. Light, sound sensitivity

6. Afterimages, visual snow

7. Constant ringing in ears

8. Cold hands

9. Gas, bloating

10. Hair loss

11. Weight loss


I did many tests and many doctors said that I’am ok, it’s just anxiety. But I continued to make research and once I took a full celiac panel. The results are here:


AGA IgA 2.04  < 25

AGA IgG 3.72  < 25

tTg IgA 13.25  < 25

tTg IgG not detected

DGP IgA 71.6  < 25

DGP IgG 0.2    <25

EMA IgA, IgG not detected


So, I only have hi DGP IgA, my doctor said that I don’t have celiac because my tTg and EMA are OK.

I also found, that my symptoms looks like Lyme or CFS/FMS, but I don’t have any joint pains. Also I read about anxiety disorder, metal toxicity and candida owergrowth, but I doubt this causes can give such severe symptoms.


So I am now on gluten-free diet for 20 days to figure out may be I have non celiac gluten intolerance, but I can’t say it helps so much. May be I need more time for gluten-free diet?

0

Share this post


Link to post
Share on other sites


Ads by Google:

Hi AlexDAK and Welcome!

 

Your symptoms do certainly sound like Celiac.  It is not uncommon to be positive on one or two of the Celiac blood tests and negative on the others - that's actually why it is so important to run all of them.  It isn't too late to request a biopsy to confirm it - but there is always a chance of getting a false negative from the biopsy and your chances of a false negative increase the longer you are gluten free prior to the test.

 

To know if being gluten free is going to relieve your symptoms, you have to be sure that you are 100% gluten free.  That means you have to check all labels, avoid eating out - especially at first, and avoid cross-contamination.  Read the "newbie" thread at the top of the "Coping With" forum for some ideas.  Also, it can take a couple of months for some people to start to see improvement - depending on your symptoms, how long you've had them, and how efficient your body is at getting rid of the antibodies.  Make sure you are not still getting gluten from somewhere and give it some more time.

 

Good luck!

0

Share this post


Link to post
Share on other sites

Your English is better than mine.  :)

 

I agree that you have symptoms of celiac disease. An elevated DGP IgA is 93-97% specific to celiac disease as see on page 12 of this report: http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf That means that 4-7% of all positive DGP IgA tests are possibly caused by something else. I'm afraid I am not sure what the other causes would be, but false positive in the tTG tests are sometimes caused by thyroiditis, diabetes, crohn's, colitis, chronic liver disease or an infection. If you doubt that you have celiac disease, perhaps one of these disorders could be to blame. 

 

Personally, I would thing that a positive celiac test, and the presence of symptoms, would point to celiac disease - especially if symptoms improve after you have been gluten-free for a long time. A 20 day gluten-free trial is very very short.  Some people experience withdrawal, and if you are one of those you could still be feeling worse on day 20 and not even started to improve yet. A 6 month gluten-free period will tell you a LOT more; a 3 month gluten-free period is sometimes enough for people  to know gluten is a problem for them. I also suggest keeping a food and symptom journal so you can keep track of how you feel.

 

Don't go gluten-free until you are sure all testing is done though. Blood tests require gluten in the diet 8-12 weeks prior to testing, and the endoscopic biopsy requires a 2-4 week gluten challenge. If you are sure all testing is done, start your gluten-free diet.

 

Those are also symptoms of hypothyroidism.  You might want to get that checked. TSH, free T3 and free T4, and TPO Ab are helpful thyroid tests.

 

Best wishes. I hope you feel well soon.

0

Share this post


Link to post
Share on other sites

So, after 40 days of gluten free my IBS-D reduced by 70-80%, I have less gas and almost no episodes of diarhhea. But my other symptoms are still present. So, I think I must have a biopsy after gluten diet after 14 days. Also I made a DNA test, but results will be after 14 days. I am sure now, that gluten have an influence on me, but I need to figure out, is this celiac or something else.   

0

Share this post


Link to post
Share on other sites

A DGP IgA most likely points to celiac disease, and since your symptoms are improving after only 40 days on the gluten-free diet, I would guess with confidence that you have celiac disease. :(

 

Keep in mind that there is a very very small minority of celiacs that were negative on the genetic tests but still had a positive celiac test. It's unusual, but it can happen. Your diet will not affect the results.

 

Good luck with the 14 day gluten challenge and biopsy. Try to ensure your doctor takes at least 6 samples for biopsy.  I hope you find the answers you are looking for.

1

Share this post


Link to post
Share on other sites




So, I have negative HLA test. Waiting for a biopsy to be 100% sure. After 14 days of gluten challenge I still have no IBS-D. I think it's beacause I began to take probiotics in the beginning of gluten-free diet.

0

Share this post


Link to post
Share on other sites

There is a small minority of celiacs who have negative genetic testing yet have positive blood tests or endoscopic biopsies, and feel better on the gluten-free diet. I'm guessing that it's celiac disease, but I tend to think that if it "looks like a duck, and quacks like a duck, it is probably a duck" .... even if doctors say it is not.  That is just my opinion though; I am not medically trained.

 

Good luck with the biopsy. Make sure they take at least 6 samples - more is better.  Let us know how it goes.  :)

0

Share this post


Link to post
Share on other sites

Hi. So, my biopsy results are ready. I'll try to translate them to english.

 

Microscopical aspect: The fragments of the small intestine mucous membrane are with weakly reduced villi length, enlarged crypt depth, with diffuse mononuclear infiltrate of own mucous plate.

 

Conclusion: morphologic picture of minor chronic duodenitis, wich may occur in 1-2 stage celiac disease.

 

 

I don't know about what stages it is written about. I have read that if there is even a little villi reduced length it is the 3-d stage by Marsh classification. Am I right? 

 

My doc said i have to be 3-4 months on gluten free diet and make the biopsy one more time to prove celiac.

0

Share this post


Link to post
Share on other sites

Hi AlexDan and Welcome to the Forum.

 

Why does he want you to repeat the biopsy in 3-4 months.  Is he waiting for even more damage to occur.  Have you had any blood work done for Celiac?

 

Colleen

0

Share this post


Link to post
Share on other sites

Hi AlexDan and Welcome to the Forum.

 

Why does he want you to repeat the biopsy in 3-4 months.  Is he waiting for even more damage to occur.  Have you had any blood work done for Celiac?

 

Colleen

Hi. I had full celiac panel done. My results are in the first post. My doc said, that I must go gluten free and after 3-4 months if there will be no villi damage, it means that the villi was damaged by celiac disease.

0

Share this post


Link to post
Share on other sites

Oh...ok..you are going to go gluten free until the next biopsy...gottcha, That makes more sense.  

 

Push for 4 months at least to get the most healing time.  Read the Newbie 101 thread under the Coping Section.  And jump into gluten free.

 

Have you had your Thyroid checked and blood test for deficiencies.  These could address the rest of your symptoms if they don't get better going gluten free.

 

It looks to me like your belong in the club  :)

 

Good Luck Alex

 

Colleen

0

Share this post


Link to post
Share on other sites

I agree that you might want to push that biopsy back a bit. Autoantibodies can linger a long time after going gluten-free. Many celiacs will still have autoantibodies after a couple of months gluten-free, and some still have measurable levels after a year gluten-free - if the are autoantibodies, there is probably damage.

 

An easier move might be to recheck your DGP IgA levels. The DGP IgA is one of the best tests for dietary compliance as it respondes to the gluten-free diet faster than the tTG based tests would - getting blood drwan is just so much less invasive.  Besides, as a general rule, doctors do not do a repeat biopsy unless you are still having problems after being gluten-free for quite some time.  That he wants to recheck "just to be sure" is unusual.

 

Welcome to the club - officially.  ;)

0

Share this post


Link to post
Share on other sites

Thanks a lot for your support.

Now I am reading more about HLA tests to make sure I have negative HLA for celiac.

My HLA results:

 

DQA1*01:04, 02:01

DQB1*05:03, 02:02

 

So, I have no DQA1*05, but I have DQA1*02:01 and DQB1*02:02 and according to this

http://www.nature.com/pr/journal/v72/n6/fig_tab/pr2012133t2.html

and this

http://www.nature.com/pr/journal/v72/n6/fig_tab/pr2012133t1.html

it's not rare to have these genes for celiacs.

 

And I also looked at this table:

http://en.wikipedia.org/wiki/HLA-DQ

And I see that DQA1*02:01 and DQB1*02:02 means I have DQ2?

 

Please, can you help me with interpretation?

0

Share this post


Link to post
Share on other sites

I made some research. According to DQA1*02:01 and DQB1*02:02 i have DQ2.2. I found that as many as 5% of patients with celiac disease carry DQ2.2 without any other risk alleles. So, now I can't say my HLA test is negative.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,365
    • Total Posts
      920,552
  • Topics

  • Posts

    • Well, I am stressed to the max. I just spent 3 days in the hospital with D and stomach pain, dizziness, chest pain, generally unwell. Then another trip to the ER on top of that. My protein was low and my RBC and hemoglobin dropped below normal in 3 days. Not terribly low, but below normal. I also had metabolic acidosis which still confuses me. I usually eat every 2-3 hours despite it causing pain to keep my energy up and was unable to eat that frequently in the hospital. I usually carry protein with me and had been taking liquid iron which I stopped a few weeks ago because my new endo is not a fan of iron supplements. As soon as I got home from the hospital I started with my protein drinks and blackstrap molasses for iron.  I now have bilateral mild pleural effusions and a nodule on my left lung, which hopefully is nothing, but was not there on a CT back in March. In addition, my left adrenal gland, which also appeared normal in March, is calcified and the report indicates this is most likely due to a previous bleed or infection. My colon appears tortuous (whatever that means) and we are waiting on colon/endo biopsies. I have been gluten-free since March except for cc so expect the biopsies to again be negative.  My primary care is useless. I am in the process of getting a new one I will see on the 7th but need the current one to fill out FMLA paperwork because I both physically and mentally need time to recover. I will have to go off of payroll for 2 weeks but I think I need to. I called the primary's office today to discuss the hospital tests which she does NOT have yet and to ask if we should/could start a low dose of prednisone because my body is attacking itself. My thyroid on ultrasound is also abnormal though my bloodwork thus far is normal. But it hurts on that side. The only reason the ultrasound was ordered is because I asked for it in the first place. The only reason I have started seeing an endocrinologist is because I found one myself. Anyway...I broke down in tears on the phone eith her today and she told me I was having a "manic episode". I have no history of mania. I only recently started taking xanax to help me cope with the stress of being sick. I was not sick until I did this stupid gluten challenge over the winter. My mother was in town and spoke with the doctor on the phone as well who was trying to get my mom to take me to a psych hospital. She also threatened to send the police to check on me. My mother assured her I was in no danger and we hung up the phone in complete shock. Admittedly, I was in tears when I called her and probably sounded like a fucking mess. But I believe I referenced the dropping iron, protein, fluid near lungs, enlarged thyroid and attacked adrenal gland then literally said "my body is attacking itself and I need help" to which she said, "I think you are manic". Lovely. If I was a mess before that phone call it was 10x worse when we hung up.  Anyway, this is the first night it has been extremely difficult to sleep. I admit my thoughts about my odd symptoms keep me up often recently. I mean, who the hell bleeds from or gets an infected adrenal gland?! I am sure it was another time I begged my primary for help. On a side not, the NP at the ER told me the primary should be putting these pieces together and communicating with my other doctors better. He then stated that he used to go to the same practice but left because the practice got too big and like a business. So I got some validation from that chat.  A melatonin or a .25 xanax usually does the trick for me to sleep but I am so disturbed about my interaction today, stressed at my health, stressed that my ex has our son so much because I am always sick (bless him for coming through), stressed that I have to go back to this awful doctor because I will need the FMLA paperwork before I see the new doc on the 7th.  8 months ago, I took a multivitamin when I remembered it and that was it.  End rant. Maybe now that it is off my chest I can finally sleep. 
    • Hi DKH0614, I use aspirin, Pepto Bismol, and peppermint tea or Altoids peppermints.  Pepto Bismol has a soothing effect on the gut.  Pepto Bismol also has aspirin in it.  Peppermint is helpful for relaxing smooth muscle tissue and getting gas out of the stomach. As per KarenG, you may be reacting to dairy.  Dairy has a sugar called lactose in it that some people with celiac have a hard time digesting.  You could try avoiding dairy for a few weeks to see if that helps.  Or try taking lactaid type pills when you eat dairy. It doesn't take very much gluten to cause an immune system reaction.  So it is important to avoid even traces of gluten if possible.  The stuff is hard to avoid sometimes if people around you don't understand how much a small amount of it can affect your body. Let us know if we can help with any  more questions, or if you have concerns we haven't addressed. And welcome to the forum! Also, if you subscribe to the thread (notify me of replies) you'll get an email when people respond to your thread.    
    • After a year and half, if you are eating gluten-free, you shouldn't be having pain from Celiac.  Perhaps you need to find out what is really causing your issues?  Dairy/ lactose is an obvious first place to look.
    • Hi! I am 15 and have been diagnosed with celiac disease for about a year and a half now and I am woundering what do some of y'all use to relive some of the abdominal pains that come along with celiac/gluten allergies?  ( Ibuprofen,  Tylenol, etc.) 
    • Hi Laurabella, Yes, you could have celiac disease!  It is important to keep eating gluten until all testing is completed, including an endoscopy with biopsy samples if the doctor recommends it.  The doctors usually do want the endoscopy.  The biopsy samples of the small intestine lining (4 to 6 samples) are checked for microscopic damage that indicates celiac disease.  Gall bladder problems can happen with celiac disease.  Your pain could also be from intestinal damage in any part of the small intestine. Some things you could try while you are waiting for your tests to be completed are stopping all dairy, and taking peppermint tea for gas in the stomach.  Celiac disease damage makes it hard to digest dairy sugar (lactose) and that can cause bloating and pain.  Constipation and diahrea are also possible fun symptoms. Welcome to the forum!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      61,439
    • Most Online
      1,763

    Newest Member
    DKH0614
    Joined