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Not Sure How To Proceed With Diagnosis..

Britt-Rocks

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Britt-Rocks Newbie
Britt-Rocks
Posted

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

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shadowicewolf Proficient
shadowicewolf
Posted

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

taynichaf Contributor
taynichaf
Posted

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 :)

Britt-Rocks Newbie
Britt-Rocks
Posted
  • Author

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. 

Britt-Rocks Newbie
Britt-Rocks
Posted
  • Author

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!

dark-angel-warriore Newbie
dark-angel-warriore
Posted

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.

Britt-Rocks Newbie
Britt-Rocks
Posted
  • Author

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. 

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1desperateladysaved Proficient
1desperateladysaved
Posted

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

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