• 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Help Interpreting My Gene Test Please!
0

14 posts in this topic

Ads by Google:
Ads by Google:


First off, you cannot, absolutely cannot, test for a gluten sensativity like you can celiac. IF it has helped being off it, then stay off of it.

The results, to my understanding, looks okay to me (I could be wrong).

You also have one of the genes, which is interesting.

0

Share this post


Link to post
Share on other sites

I am a DQ2.2 and I have celiac, but is it considered a "rare celiac gene".

Some people without a DQ2 or DQ8 gene have celiac.

Some people with these so-called celiac genes --do NOT have celiac.

This is not a diagnostic tool, therefore. There are doctors who think that if you do not have a DQ2 or DQ8 gene, your risk of developing celiac is low or nil.

Yet, we see this is not true on here once and awhile.

My doc biopsied a guy with neither of these genes and his villi were totally flat.

If you feel better off gluten, then that is your answer.

Not everyone with gluten-related issues is a full-blown celiac, but they could very well be gluten intolerant and suffer horrid symptoms.

Read this:

http://www.livingwithout.com/issues/4_15/qa_augsep11-2554-1.html

0

Share this post


Link to post
Share on other sites

I should also note i have both genes. To my understanding those with both have a slightly higher risk.

0

Share this post


Link to post
Share on other sites

Thanks for the info, I know I shouldn't worry about the gene testing stuff but Im some one that likes facts and data! Also most of my symptoms were not so topical with the traditional Celiac. I had multipul protruding discs/ DDD, compression fracture at T7, leg pain/ joint pain, calf cramping/ heels spurs plantar fasciitis, costochondritis,right SI joint inflamation and pain, I was actual scheduled for and SI join fussion, boy I'm happy I didn't go thought with that. I could go on and on. Most of this started when I crash in a road race a few years ago, I injered my hip/ SI joint and the injections and radio frequency started and I feel apart, oh I almost forgot the best symptems daily migraines, fatigue and bran fog so bad I was getting lost while drive in the town I've lived in forever. After reading some other people's post here I have relized that maybe they are normal Celiac symptems!

0

Share this post


Link to post
Share on other sites
Ads by Google:


If I'm reading your report correctly, you have a single DQ2.2 - which as IH mentioned is a gene regarded at lower risk to develop Celiac Disease - note...lower risk, not without risk.

I find your numbers interesting as they are very close to my own kid's negative numbers - all of whom had celiac symptoms resolve after removing gluten. I have often wondered if having a Total IgA in the lower "normal" range may effect the number of antibodies detected in celiac blood tests.

While having "celiac genes" is considered common in those with diagnosed Celiac Disease, they are not required for the onset of Celiac Disease. IMO the data will be far more complete in analyzing risk once the number of folks that have gene testing is increased - as this test is not a necessary component of celiac diagnosis - I'd guess we are a long way off from increasing the data.

Here is one sampling regarding gene testing among diagnosed celiacs:

http://www.ncbi.nlm.nih.gov/pubmed/21292306

Bottom line - removing gluten has improved your health - stick with it :)

0

Share this post


Link to post
Share on other sites

Thanks gottaski! I'm glad you you kid has improved on the diet, I'm worried about my son, he has been complaining about his low black and leg cramps since he was 12. Thinking about changing his diet, but geting a 14 year old to buy into a gluten-free diet may be a problem. Anyhow that is the same age when my back problem began. Started going to to chiropractor on a regular basis when I was 12. Ive just had a hard time excepting this was all due to my diet. Almost to good to be true.

0

Share this post


Link to post
Share on other sites

Irishhart I read the article you put in your post, very intresting, thanks.

0

Share this post


Link to post
Share on other sites

I'm worried about my son, he has been complaining about his low black and leg cramps since he was 12. Thinking about changing his diet, but geting a 14 year old to buy into a gluten-free diet may be a problem. Anyhow that is the same age when my back problem began. Started going to to chiropractor on a regular basis when I was 12. Ive just had a hard time excepting this was all due to my diet. Almost to good to be true.

My youngest two sons were 13 and 15 when I was diagnosed. Each had completely different symptoms. We let them decide to go gluten-free for themselves - as it really wouldn't be possible to make teenagers stick with it unless it was their decision - IMHO.

The 15 year old decided first - his symptoms were GERD, along with recurring flu type symptoms - his growth rate also slowed, rather than increased during puberty. He was convinced after the first few accidental and intentional glutenings - his reactions became quite severe rather quickly gluten-free.

The 13 year old had achy joint issues from about age 7 or 8 - was screened regularly for AIs. He also vomited more than his share - without other digestive symptoms. Anyway our home slowly evolved from a combined to a gluten-free kitchen - as the gluten decreased he felt much better. Eventually we removed the last gluten containing items from the kitchen and his joint issues completely resolved. He is not careful about CC when out with friends (he's 17 now), but does order gluten-free.

Just be consistent with your diet and share the improvements to your health that result from removing gluten. My boys don't often ask questions until they have processed the info for awhile - give it time and give gentle nudges when the opportunity presents itself.

0

Share this post


Link to post
Share on other sites

Thanks for the advice, my son is very stubbern, wonder were he gets it, I had an OMM tell me last year I should look into a gluten-free diet, I totally went off on her saying how could a mechanical back problem be caused by gluten, I thought all of my problem were from being out of alignment all the time. I have since apologized to her.

0

Share this post


Link to post
Share on other sites

Thanks for the clarification shadowicewolf. I was confused because it said 2DQ2 I didn't know if I had two copies of the same gene upping the risk.

0

Share this post


Link to post
Share on other sites

Thanks for the advice, my son is very stubbern, wonder were he gets it, I had an OMM tell me last year I should look into a gluten-free diet, I totally went off on her saying how could a mechanical back problem be caused by gluten, I thought all of my problem were from being out of alignment all the time. I have since apologized to her.

Been there....my back pain, weak ankles and knees that popped out regularly from age 11 magically disappeared since I removed gluten three and half years ago! My back problems were blamed on missing a part of my last vertebrae and a rear-end collision at age 18 - crazy that it was what I was eating - but true. So glad I never had the back surgery they wanted to perform on me in the 80's!

0

Share this post


Link to post
Share on other sites

Irishhart I read the article you put in your post, very intresting, thanks.

That's the best explanation of NCGI and if Dr. Fasano, a leading celiac expert recognizes what it can do to a body, then I think it is worth considering.

Gluten sensitivity can create havoc. So even if you may not have celiac, you can still be suffering from some form of gluten sensitivity ---and being off gluten and feeling well is the only way to tell.

0

Share this post


Link to post
Share on other sites

Havoc, your not kidding, before I got sick my idea of a fun was cycling 100 miles as fast as I could so I already a good idea were my pain threshold was until last spring when I would spend most mornings in the fetal whimpering and tryin to talk myself into going to work. It only took one week of being gluten-free to start feeling better I just can keep thinking that it was somthing more than a sensitivity, I just need to except it and move on. I was just suprized that my test wasn't definitive, but as many of you have said the testing is not the end all! Thanks again for the info.

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
      106,796
    • Total Posts
      932,499
  • Member Statistics

    • Total Members
      64,281
    • Most Online
      3,093

    Newest Member
    Michaeldp
    Joined
  • Popular Now

  • Topics

  • Posts

    • Good advice Ennis!  I would add baking and freezing some gluten-free cupcakes to have on hand, so that she is never left out.  Be sure to read our Newbie 101 tips under the coping section of the forum.  Cross contamination is a big issue,  If the house is not gluten free, make sure everyone is in board with kitchen procedures.   Hopefully, your GI talked about the fact that this AI issue is genetic.   Get tested (and your TD1 child).  TD1 is strongly linked to celiac disease.  About 10% of TD1's develop celiac disease and vice versa.  Get tested even if you do not display any symptoms.    http://www.cureceliacdisease.org/screening/ https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/
    • What does weak mean?  Like you squat down and and you can not get back up?  Or are you fatigued?  When you said blood panel, was your thyroid tested?  Antibodies for thyroid should be checked if you have celiac.  So many of us have thyroid issues.  
    • We are not doctors, but based on the results you provided, you tested negative on the celiac screening test.  You could ask for the entire celiac blood panel to help rule out celiac disease.  The other IgA that was high?  It normally is given as a control test for the TTG IgA test (meaning if the celiac test results are valid).  In your case, the TTG IgA test works.  Outside of celiac disease, you might have some infection.  Discuss this with your doctor as he has access to your entire medical file.  I would not worry about it though over the weekend!  
    • See: http://www.cureceliacdisease.org/faq/can-a-skin-biopsy-for-dermatitis-herpetiformis-dh-confirm-celiac-disease-or-is-an-endoscopy-still-needed/ Take a copy of that with you or mail it to the doc. How many endoscopic biopsies did they take? Those with dh tend to have patchier damage than "normal" celiacs.
    • Ironictruth, I think that is a very insightful thought. since different antibodies present for different body systems all the ways gluten affects the body is still not well understood. Here is a case of presumably someone who had the gut damage of a celiac but also had neurological damage. http://www.nature.com/nrneurol/journal/v3/n10/full/ncpneuro0631.html entitled "A case of celiac disease mimicking amyotrophic lateral sclerosis" so it has happened in the literal but since this is not well understood people don't make the connection today. I would also point you to this hindawi article on the "Lesson's learned from Pellagra" but I am afraid we haven' learn't yet. https://www.hindawi.com/journals/cggr/2012/302875/ notice specially the 2.1 section clinical feature of pellagra and all the neurological symptom's once associated with a Pellagra patient. quoting "The neurological manifestation did not stop there because other degenerative conditions, such as an amyotrophic lateral sclerosis-like picture, were described, with fasciculation of the tongue and upper and lower motor neuron signs. Cerebellar syndromes occurred and vertigo was frequent. Headaches, sensory and pain syndromes, epilepsy, and involuntary movements were noted as well as sleep disturbances. Cord lesions were also seen, as was optic atrophy, so there were multiple sclerosis (MS), like variants." which tells me doctor's don't recognize pellagra today when they see it because they haven't seen it in 75+ years. ***this is not medical advice but read the hindawi journal on lesson's learned and I think you will see yourself in their many descriptions of all the way Pellagra presents itself to doctor's and patients still suffering today and you can see why it (like celiac) is hard to pin down today because it presents in so many ways it can be soo overwhelming and since vitamins are not a focus anymore today (especially b-vitamins) that today I believe we are doomed to repeat history's lessons unless the current generation learns again all the ways pellagra presents itself today. good luck on your continued journey. posterboy by the grace of God,  
  • Upcoming Events