• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Can I Have Gluten Intolerance?
0

14 posts in this topic

Recommended Posts

AlexDAK    0

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?

Share this post


Link to post
Share on other sites
Ads by Google:
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!

Share this post


Link to post
Share on other sites
nvsmom    332

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.

Share this post


Link to post
Share on other sites
AlexDAK    0

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.   

Share this post


Link to post
Share on other sites
nvsmom    332

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.

  • Upvote 1

Share this post


Link to post
Share on other sites
Ads by Google:


AlexDAK    0

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.

Share this post


Link to post
Share on other sites
nvsmom    332

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.  :)

Share this post


Link to post
Share on other sites


Ads by Google:


AlexDAK    0

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.

Share this post


Link to post
Share on other sites
GF Lover    201

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

Share this post


Link to post
Share on other sites
AlexDAK    0

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.

Share this post


Link to post
Share on other sites


Ads by Google:


GF Lover    201

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

Share this post


Link to post
Share on other sites
nvsmom    332

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.  ;)

Share this post


Link to post
Share on other sites
AlexDAK    0

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?

Share this post


Link to post
Share on other sites
AlexDAK    0

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.

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
      107,883
    • Total Posts
      938,465
  • Member Statistics

    • Total Members
      65,788
    • Most Online
      3,093

    Newest Member
    KaitlinP
    Joined
  • Popular Now

  • Topics

  • Posts

    • Sorry to hear about the loss, bread is a pain for some, Canyon house makes one many swear by...I have 2 issues with it so I can not even try it. I been using Julian Bakery Bread for awhile, the seed one was wonderful even toast like gluten bread, while the coconut one made the most amazing french toast, and the almond one was great toasted with mashed avocado. I recent perfected a sandwich bread for my bakery, so will be making my own grain free, starch free, 1 net carb bread loafs for myself.
      NOW a bit more on this topic, I am currently converting it to a sugar free German chocolate cake loaf for testing this weekend (these are going to be bakery item only for my store)
    • Hi everyone! I am a 23 yo female and was diagnosed Celiac in January 2016 and have been gluten free since then. My IgA levels are down to 4 and my Celiac is very under control. However, I recently have been dealing with a lot of unexplainable pain and discomfort that no one can seem to explain to me and wanted to see if anyone has experienced anything similar. For about a year, I have been occasionally getting severe abdominal pain that seems to be concentrated in my rectum. It starts by feeling overall icky, crampy and sort of like I have "twinges" in my rectum. It feels like maybe I need to have a bowel movement but I dont, and if I do it doesn't help the pain. So I feel bad, and then all of a sudden I feel like I am being stabbed in my rectum. The stabbing comes and goes but causes me to like roll around on the floor it is so painful. This sometimes only happens once and is over in 20 seconds, but generally it is an all day thing and lasts like 8-10 hours. These generally have been coming 2-3 times per month one day apart. They seem to come about every four weeks (not during my period or ovulation though) and naproxen and heat helps some, so I thought it was maybe OB/GYN related (they also started shortly after I switched for BC pill to an IUD) but I have seen two OB/GYNs and both have no idea and think it is gastrointestinal, maybe gas pain of some sort that is possibly triggered by hormones related to my cycle. However my gastroenterologist is also stumped and thinks its related to my uterus cause it seems to be somewhat cyclical. Anyway they're horrible and I can't figure out what they are, they don't seem to be related to what I eat (though I should probably start tracking) or a particular time of day. Sometimes they seem to come while I am exercising, but sometimes they wake me up in the middle of the night. I should also add that I have no GI symptoms involved with these painful episodes, my bowel movements seem completely normal, no gas or anything either. Also, the last two days, I have woken up in the middle of the night with the feeling of being bloated and crampy. Not painful per say but extremely unpleasant. Again, I'm not on my period so idk what is causing this, especially cause both times it woke me up and I am a deep sleeper. Now, for the last 30 minutes I have been having non-painful muscle spasms in my left lower abdomen. It feels like a flutter, if I put my fingers against the spasm I can feel it distinctly. Again it doesn't hurt, but feels weird and I've never had a muscle spasm there before. If anyone has ever had any of these symptoms before or has any idea what me going on I'd be very grateful! Is it possible its related to glutening? Since I caught my Celiac really early I don't really know what my symptoms of being glutened are, the few times I know I have been I don't get diarrhea but instead extreme bloating, acid reflux, and overall feeling really crappy and anxious. I have a whole host of health issues these days that have been causing me a lot of stress (I'm in medical school and don't have time for these debilitating pains!) and it would be awesome to have some answers.   Thank you all, K
    • Thank you!   I see a Dietician early next month and figured I will need to be more strict early on.    There is so much to learn.  I am grateful for the apps available that allow me to scan UPC's to find out what is and is not gluten-free, but will be confirming by reading labels  too.   I cleared out quite a bit of space in my cupboard today.  It is only me in the house since I lost my husband earlier this year so it will be easier to control what is in the house.    He loved bread as much as me so it would have been much harder with the 2 of us here
    • Welcome to the board. Many of us keep safe gluten free snacks on hand for times when we are away from home.  In addition to what Karen mentioned fruits, nuts, hard boiled eggs etc. If it is a long trip a cooler can keep stuff fresh for you and they make ones that you can plug into your car. How were you diagnosed? Many folks carry the genes but don't develop celiac. You should have had a celiac panel blood test and an endoscopy. If you are new to the lifestyle then do check out the Newbie 101 threead at the top of the Coping section. it has a lot of info to keep you safe.
    • If you are super sensitive (or have become super sensitive) there is an oats purity protocol used by just a few companies. The fields do not grow gluten containing grains for 4-5 years before the oats are planted, the fields are walked several times a season for any plants not belonging to be pulled by hand, and all the equipment and facilities used to harvest are dedicated equipment. It's a bit pricey, but it produces the only oats that I don't react to (although I have not tried all certified gluten free oats).  There are a couple variations of magnesium. Some cause loose stools so check the source of magnesium (and make sure it's gluten-free). Calm I've used with no problem. If you are stressed, you will burn through magnesium faster.  Roommates create some complications. I had a shared kitchen for a vacation this past year, and I was constantly cleaning. I'm so used to my gluten-free kitchen I became very aware of sinks being used to pour pasta water in, bread crumbs left from a cut sandwich, and how much gluten a simple sponge can be exposed to. I kept my sponge to clean my area in a ziplock bag next to the sink. And if I was cleaning fruit or veggies, I filled a large bowl with water to use so I wouldn't have to always be cleaning the sink. If you have wooden utensils, make sure they aren't be accidentally used. A friend was getting cross-contaminated from shared condiments.  My celiac reactions for cross contamination are not gastro but neurological so I can't offer much with that. A proper glutening is the only thing that gives me gastro symptoms, and it is the most painful experience! In either case, I drink lots of water. I will drink a gallon on those days. Throw some Calm in there, but force fluids. I also use Ultima Replinisher (which I typically use after exercise) if I'm forcing fluids, and I drink mugs of warm broth if my gut is really not doing well.  Hang in there, C. Hope you feel better soon.     
  • Upcoming Events