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

  • 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.

Not Sure How To Proceed With Diagnosis..
0

8 posts in this topic

Hi, 

 

Many years ago I was diagnosed with IBS (constipation). I was also diagnosed with eczema.  I have had issues with fatigue, fogginess, depression, to name a few other symptoms. Last August I had surgery to remove a cyst on my pituitary gland.  In October I started having severe abdominal pain. I visited the ER and they thought it was due to an ovarian cyst, ovary was double the size it should have been.  They were going to perform surgery that night but I declined and opted to see if it decreased in size in one month's time (no immediate danger to my health). I understood that if the pain got worse, I was to go in sooner. Anyway, after that month the cyst had disappeared but the pain remained. The doctors did a CT scan and found nothing.  They were going to do a colonoscopy but the GI doc said it was not necessary.  I was referred back to my GYN and he wanted to open me up and do a diagnostic surgery.  I was put on the schedule for 2 months later. While at that appointment my husband asked about going gluten free (we had heard a story from someone we know who was experiencing similar symptoms) and the Dr. said it couldn't hurt.  They DID NOT test me for celiac disease before going gluten free.  I even consulted my PCP who was out of the office but the Dr. filling in for her said, "it couldn't hurt." The pain, along with other symptoms, disappeared after about 10 days of going gluten free. My surgery was cancelled and I am still gluten free and symptom free!!  I just wish they would have done a simple blood test to start.  Do many doctors look for celiac?

 

My question is how to proceed with a diagnosis?  The blood test is no longer an option as I started my gluten free diet in December 2012. An endoscopy might not show anything, perhaps any potential damage started to heal after being gluten-free for 5 months.  Will a Dr. even refer you for an endoscopy if no blood work? I had a weekend in March where I thought I would test it by consuming gluten and I was sick (pain, constipated, lethargic, depressed) for a week! I never want to have gluten again (even though I want it, nothing is worth the effects!) so I'm not sure how to get tested or if it is really important. This is why I brought up the eczema...could eczema and DH be mixed up?  The "eczema" has been clearing up slowly since removing gluten and I read that a dermatologist can do a skin biopsy to determine if it is DH. Combined with my other symptoms would a diagnosis of DH be enough to diagnose me with celiac? 

 

I didn't have pain from gluten (even though I had many other symptoms) until after my brain surgery last year. I've read that certain stressful experiences can trigger celiac disease. Does anyone have any experience with this? 

 

One other thing: before I knew to check medications, I took some Advil Liqui-Gels. I had a reaction about 12 hours later. I knew it was from the Advil because I was keeping a very detailed food journal. I checked online and sure enough, they contained gluten. This might sound dumb, but can I be that intolerant to gluten without having celiac disease? I mean, how much gluten is really in 2 capsules of Advil??

 

At my last appointment, my doctor basically said if you know that gluten is causing issues, just keep to a gluten free diet.  While I plan to do this for the rest of my life, an answer either way is important to me, for some strange reason. Any thoughts/suggestions would be much appreciated.

 

Thanks for taking the time to read my wall of text and any insight!!

 

-Britt

0

Share this post


Link to post
Share on other sites


Yes, NCGI (non celiac gluten intolerance) can have many of the same symptoms and severity as Celiac without the autoimmune response.

0

Share this post


Link to post
Share on other sites

An answer, for some reason, is very important to me as well! So i get it :)

 

The only test for celiac that doesnt require a gluten filled diet for accuracy is the genetic testing... This alone wont diagnose you with celiac though, and I've heard this test has resulted in negatives for people later diagnosed with celiac by biopsy/blood tests. I think that a biopsy and blood work now will be totally useless since you are already gluten free. Unfortunatly, the only way to be officially diagnosed is by doing a gluten challenge and going through with blood tests and all that... But I wouldnt even do that if I were you.

 

I've also read that if someone has DH, it does not mean they have celiac disease.... I'm not sure how true this is, but it also says that the gluten free diet helps those with DH. I think this testing would be your only hope at this point! I don't know much about gluten intolerances because I jsut discovered I had one, but I have been doing CRAZY research on it! I mean, what do you even have to lose by doing a skin biopsy? You might test positive or you might test negative, either way you should be gluten free :)

 

You could always just do a self diagnoses... No one has to know! Lol. Just call yourself a celiac and go on with your happy, gluten-free life :)

0

Share this post


Link to post
Share on other sites

Yes, NCGI (non celiac gluten intolerance) can have many of the same symptoms and severity as Celiac without the autoimmune response.

Thank you, I didn't realize it could be as severe. 

0

Share this post


Link to post
Share on other sites

An answer, for some reason, is very important to me as well! So i get it :)

 

The only test for celiac that doesnt require a gluten filled diet for accuracy is the genetic testing... This alone wont diagnose you with celiac though, and I've heard this test has resulted in negatives for people later diagnosed with celiac by biopsy/blood tests. I think that a biopsy and blood work now will be totally useless since you are already gluten free. Unfortunatly, the only way to be officially diagnosed is by doing a gluten challenge and going through with blood tests and all that... But I wouldnt even do that if I were you.

 

I've also read that if someone has DH, it does not mean they have celiac disease.... I'm not sure how true this is, but it also says that the gluten free diet helps those with DH. I think this testing would be your only hope at this point! I don't know much about gluten intolerances because I jsut discovered I had one, but I have been doing CRAZY research on it! I mean, what do you even have to lose by doing a skin biopsy? You might test positive or you might test negative, either way you should be gluten free :)

 

You could always just do a self diagnoses... No one has to know! Lol. Just call yourself a celiac and go on with your happy, gluten-free life :)

Thanks! Yeah, I will have to skip the gluten challenge. I got glutened last Friday and am still miserable and that was due to cross contamination as far as I can tell. As much as I want an answer the side effects are not worth it to me. Especially since either way I'll need to remain gluten free...

I am going to mention the skin biopsy at my next Dr. appointment this month. 

Thank you for your response. :) Take care!

0

Share this post


Link to post
Share on other sites

This might not help your general question but I wanted to share my story with you because I have gone through something very similar (still going though it as a matter of fact)

I started really feeling the affects of Celiac after my pregnancy 4 years ago (just like you it was somewhat triggered )

 

But before that i been told that my ovaries were also double the size that they should be. However I was told that they would try to make them go down with medication (I had not had my period for 7months, was not  pregnant and always had sharp pains).

 

I was never diagnosed with IBS, but have been proned to constipation for years and years (way before pregnancy)... I just assumed it was the way my metabolism worked and blame the bloating on the fact that I can not burp (not a joke, I physically can not burp, Gas does not come back up). Plus I was always too shy to ask my doctor.

 

To my understanding the most accruate tests are the blood tests and the biopsy... But I FULLY understand you not wanting to go throught he gluten chalenge.

 

When my blood work came back positive, I immidiately started a gluten free diet, started feeling better (mind fogginess went away) after about 48 hours.

2 Weeks later (last week) my doctor told me I had to go back to a gluten filled diet because she wanted to make sure and sent me for a biopsy scheduled over 3 and a half months later.

I cried... I went back to eaten Gluten, I swear I was the worst person to be around for the first 5 days... then I remembered what it was like to be in pain again all the time...

 

the ONLY reason why I am going through this, knowing that a gluten free diet makes me feel better, is because i WANT to be 100% sure.

 

In your case (sorry i didn't mean to go on about me, i just wanted to illustrate :) ) you have already been gluten free for so long, and you already know you are feeling better.. I would say that it is NOT worth the gluten challenge, not at this point at least, by now your stomach has probably healed and it would take a while for the damges to be visible again.

 

The genetic test is indeed an option even though it will not tell you whether you are positive or not, it will tell you whether or not you carry the gene. And if you carry the Gene then that should suffice.

 

You have already done the pros and cons by saying "so I'm not sure how to get tested or if it is really important"

;)

By the way, I was diagnosed with dermatis when I was little and was told that it was a form of "under the skin eczema", and my doctor (when I got diagnosed) told me that she has kids that had their arms and legs full of "eczema" tested positive for Celiac, and it then went away without Gluten.

0

Share this post


Link to post
Share on other sites

This might not help your general question but I wanted to share my story with you because I have gone through something very similar (still going though it as a matter of fact)

I started really feeling the affects of Celiac after my pregnancy 4 years ago (just like you it was somewhat triggered )

 

But before that i been told that my ovaries were also double the size that they should be. However I was told that they would try to make them go down with medication (I had not had my period for 7months, was not  pregnant and always had sharp pains).

 

I was never diagnosed with IBS, but have been proned to constipation for years and years (way before pregnancy)... I just assumed it was the way my metabolism worked and blame the bloating on the fact that I can not burp (not a joke, I physically can not burp, Gas does not come back up). Plus I was always too shy to ask my doctor.

 

To my understanding the most accruate tests are the blood tests and the biopsy... But I FULLY understand you not wanting to go throught he gluten chalenge.

 

When my blood work came back positive, I immidiately started a gluten free diet, started feeling better (mind fogginess went away) after about 48 hours.

2 Weeks later (last week) my doctor told me I had to go back to a gluten filled diet because she wanted to make sure and sent me for a biopsy scheduled over 3 and a half months later.

I cried... I went back to eaten Gluten, I swear I was the worst person to be around for the first 5 days... then I remembered what it was like to be in pain again all the time...

 

the ONLY reason why I am going through this, knowing that a gluten free diet makes me feel better, is because i WANT to be 100% sure.

 

In your case (sorry i didn't mean to go on about me, i just wanted to illustrate :) ) you have already been gluten free for so long, and you already know you are feeling better.. I would say that it is NOT worth the gluten challenge, not at this point at least, by now your stomach has probably healed and it would take a while for the damges to be visible again.

 

The genetic test is indeed an option even though it will not tell you whether you are positive or not, it will tell you whether or not you carry the gene. And if you carry the Gene then that should suffice.

 

You have already done the pros and cons by saying "so I'm not sure how to get tested or if it is really important"

;)

By the way, I was diagnosed with dermatis when I was little and was told that it was a form of "under the skin eczema", and my doctor (when I got diagnosed) told me that she has kids that had their arms and legs full of "eczema" tested positive for Celiac, and it then went away without Gluten.

Thank you, yeah, I think I will just opt for the genetic test and the skin biopsy for now. Still waiting for the days to go by until my appt. :) Good luck on your challenge, I hope it goes by fast for you. 

1

Share this post


Link to post
Share on other sites

My diagnosis was made by, an absolutely positive genetic test, my list of responses to the diet, and the exam when I presented to the MD.  I looked 5 months pregnant just after starting gluten free.  Further proof has since appeared such as from a nutrient absorption test.  This showed evidence of mal absorption and extreme stress on the body.

 

I had eczema in high school and nobody could ever seem to tell me what caused it.  I eliminated gluten once, but I depended on peanut butter and rice which I also have problems with.  So close, and yet so far!

 

I did have an IgA test 3 weeks after gluten free which was negative.  Several more months later it was slightly positive.  Hmmm

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
      102,702
    • Total Posts
      914,492
  • Topics

  • Posts

    • Do this, scientists! (experiment to confirm/deny the existence of "leaky gut")
      Good idea! Add also the lactulose - mannitol test, to confirm they are/are not experiencing leakyness in the gut, then correlate the results with the symptoms (obviously digestive symptoms would have to be excluded, because diarrhea and bloating will probably be present anyway, due to having damaged intestines). You see, ironically it would be "gluten-free challenge", because possibly systemic symptoms ("leaky gut syndrome")  and GI symptoms start after going IV fluids -> gluten-free (instead of "gluten challenge", which would be gluten-free -> gluten).
             
    • "Pre-Celiac" & scared
      PPIs should not affect your digestion of gluten one way or another. Many folks with celiac disease may have villous damage without obvious symptoms. Others eventually get symptoms after the disease is "activated," but exactly how or why this happens is not yet clearly understood. Biopsies are generally done after someone has symptoms, and likely already has villous damage, so I would imagine your doctor must be necessarily a bit vague about whether you might have "inactive" or "active" celiac disease. The gold standard is to get a biopsy while still eating gluten, and then another after being on a gluten-free diet for some time, to assess whether you heal without gluten in your system. Positive genes and blood work, AND villous atrophy would seem like fairly strong evidence, but that's up to your doctor to determine. If you feel comfortable sharing your test results on the forum, some folks here can give you their two cents. But listen to your doctor! Glutenease might help your digestion, but if you have an autoimmune reaction to gluten, it won't prevent the possible damage that comes with gluten mistakes. Research on l-glutamine is somewhat supportive for healing, but it's not a panacea.  You will read about various levels of sensitivity and prudence here and elsewhere. Eventually you'll come up with a plan that you consider is "safe," but hopefully will still let you get out in the world. Read up on gluten-free groceries and how to deal with restaurants safely, and you ought to be able to find a happy "middle-path" between prudence and paranoia. I'm one of the fairly sensitive/paranoid types at this point in my life. I personally don't worry too much about possibly breathing in gluten, but on the other hand I wouldn't eat anything that's been out where flour is in the air. Nor would I use a shared toaster or fryer. Again, it's important that you form a lifestyle approach that is informed about the risks but still a good life! Most importantly, work with your medical team to determine if you in fact have celiac disease.
    • Second Panel has come back...advice?
      We are utilizing the "our kitchen is completely gluten free" and DEFINITELY checking every label every time methods. SO glad to hear my DGP should drop!!!! 
    • Celiac in 10 month old?
      Without reference ranges for the IgA there's no telling wether the IgA or tTG are anything worth while.  I think your best bet is to wait on a call from them for interpretation. I know that's hard but really, they are the ones with all the necessary information.  
    • Celiac in 10 month old?
      Hello all, new to this site!  My 10 month old son was referred to an endocrinologist as he has consistently failed to chart in both weight and height.  After discussing his symptoms with the endocrinologist (fussiness after eating, diarrhea) she suggested it could be Celiac disease.  She ordered several blood tests to which I have received results that I am not quite sure how to interpret (and of course I haven't heard back and she hasn't returned my messages).  The following abnormal test results I received: Immunoglobulin A:  Less than 8 mg/dl IgA TTG Antibody:  Negative (I've read this can be a false negative if he is IgA deficient?) SGOT/AST:  93 U/L (standard 25-55) SGPT/AST:  49 U/L (standard 13-45) IgF-1/Somatomedin-C:  Less than 25 ng/ml (standard for age range 16 days to 1 year is 55-327) Any insight into what these results mean would be extremely helpful and appreciated!  Also, my son has been exclusively breastfed; if he does, in fact, have Celiac disease is gluten transferred through breast milk? 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      59,739
    • Most Online
      1,763

    Newest Member
    larnotlars
    Joined