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

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


Ads by Google:

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
      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)

  • Member Statistics

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

    Newest Member
    DKH0614
    Joined