Can I Have Gluten Intolerance?

[AlexDAK]

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?

[NoGlutenCooties]

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!

[nvsmom]

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: Open Original Shared Link 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.

[AlexDAK]

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.   

[nvsmom]

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.

[AlexDAK]

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.

[nvsmom]

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.  

[AlexDAK]

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.

[GF Lover]

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

[AlexDAK]

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.

[GF Lover]

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

[nvsmom]

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.  

[AlexDAK]

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

Open Original Shared Link

and this

Open Original Shared Link

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

 

And I also looked at this table:

Open Original Shared Link

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

 

Please, can you help me with interpretation?

[AlexDAK]

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.