Help! I Am Soooo Confused!

[Gina C.]

Hello everyone! I have been looking at this site and see that there are alot of well informed people (probably more than the Dr's I have seen lately).

I have been through a major roller coaster. I was seen by a naturopathic dr last year who put me on a basic gluten free diet and I felt great... then my cravings for sweets/carbs & sugar overtook me and I started the viscious cycle of eating gluten. I started breaking out with itchy patches & dr's are unsure if it is candida or eczema. I have been put on tons of medications including antibiotics and prednisone.

I started to get desperate for an answer to my problems and started doing research on the web. I realized that gluten intolerance can mimic candida. Also, eczema is also oen of the symptoms of gluten intolerance.

My symptom history is not typical for gluten intolerance or celiac. I have had chronic constipation as long as I can remember (and yes there are occasional times of diahrrea), abdominal distention/bloating, occasional cramping & flaulence. Many of these symptoms have gotten better if not disappeared on the gluten-free diet. The constipation is better since I take Triphala supplements daily.

Since the drs wouldn't listen to me, I spent alot of money doing a self test with enterolab. The results showed that I am gluten intolerant, have moderately severe malabsorption issues, allergic to milk and soy. But when I was searching for information on the web I came across a few websites that stated that the enterolab test is not accurate/reliable.

I have been gluten free for 3 months now and was just seen by an allergist yesterday who took blood to test for celiac (he said that the fact that I have been gluten free for 3 months is not an issue for the test). However, everything that I read online states that the test will probably come back negative.

I would like to also note that an allergy test that was done 11 years ago showed an allergy to wheat.

I am so confused.. should I stay gluten free? ( I know that it is a healthy diet- but it is difficult to maintain). What happens if the blood test comes back negative? (can I believe that it is accurate).

Please understand that I am not wishing to have this disease... but after all I have been through, I don't want to overlook anything. I am so tired of having blood tests done that come back negative and be told that they don't know what is wrong with me.

Thanks for taking the time to read through my post and I look forward to your well informed replies!

[ohsotired]

Hi Gina,

Welcome! You've found a great resource here!

Bearing in mind that I was just dx'd with a 'mild case of Celiac' and am pretty new at this, here is what I have to say. Take it with a grain of gluten free salt.

The allergy testing that showed you allergic to wheat was probably right (was it a scratch test?), and your Enterolab tests were probably right (who's bashing them?).....but the doctor that told you that you being gluten free will not affect your tests.........he's way wrong. Your tests will very likely come back negative.

If you know that being gluten free makes you feel better, why not stay that way? I know it's not an easy diet to maintain, but you should do it for your health - you're worth it!

[GFinDC]

Hi and welcome. You might want to check out the dermatitis herpetiformis (DH) area for the symptoms related to skin issues. DH is a skin problem that shows up in some people with celiac.

[RiceGuy]

  Gina C. said:

My symptom history is not typical for gluten intolerance or celiac. I have had chronic constipation as long as I can remember (and yes there are occasional times of diahrrea), abdominal distention/bloating, occasional cramping & flaulence. Many of these symptoms have gotten better if not disappeared on the gluten-free diet. The constipation is better since I take Triphala supplements daily.

Your symptoms are not so unusual for Celiac. Not everyone gets diarrhea. Your other symptoms are even more common.

As for the itchy patches, I agree with the other post that it could be DH.

Welcome to the board!

[Gina C.]

Thank you all so much for all your input.

As for DH-- my derm stated that the rash that I have is not DH.

I am so upset that the Allergist took my blood to test for celiac knowing that I am 3 months gluten-free and he insisted that it would not effect the test results.

What a waste!! I feel that I will never know for sure what is wrong with me! Every dr I see tells me something different, but always downplay the probability of gluten intolerance & Celiac.

When I received my results from enterolab, my derm said :huh, what do you know- you were right." Can u believe! But he insisted that the issue I am facing now has nothing to due with Gluten.

I don't know what to think anymore. It is so hard to remain gluten free when in your mind you are unsure if you even have a gluten issue!

I am a full blood italian and I have susatined myself on gluten my entire life!

I am so happy to hav found a place where just maybe I can finally get some answers.

BTW.. if you search the web about enterolab you will find numerous sites that question it's validity... that is why I am second-guessing my results.

[Jestgar]

  Gina C. said:

I am a full blood italian and I have susatined myself on gluten my entire life!

You can still sustain yourself on pasta, only now you'll be motivated to try all the non-gluten varieties out there.

[bsiyatadshmayah]

  Gina C. said:

As for DH-- my derm stated that the rash that I have is not DH.

Did he do a skin biopsy? Maybe you said that already, but please humor me.

  Gina C. said:

I am so upset that the Allergist took my blood to test for celiac knowing that I am 3 months gluten-free and he insisted that it would not effect the test results.

What a waste!! I feel that I will never know for sure what is wrong with me! Every dr I see tells me something different, but always downplay the probability of gluten intolerance & Celiac.

This is all a symptom too...of the general ignorance in the "health care" industry regarding celiac disease.

  Gina C. said:

When I received my results from enterolab, my derm said :huh, what do you know- you were right." Can u believe! But he insisted that the issue I am facing now has nothing to due with Gluten.

Don't buy it.

  Gina C. said:

I am a full blood italian and I have susatined myself on gluten my entire life!

Have you read lately how many Italians are being diagnosed with celiac disease?? Europe is waaay ahead of us on this one.

  Gina C. said:

BTW.. if you search the web about enterolab you will find numerous sites that question it's validity... that is why I am second-guessing my results.

Yup. They're all snarling after one another. I personally think Dr. Fine is on to something. I'm also guessing that he's waiting to publish for his own reasons, possibly to do with the fact that the competition regarding medical research is fierce out there. I seem to remember reading somewheres long ago that research can, and often is stolen. Just a guess. I have no factual basis that I can point to for this theory of mine.

Go with your gut. (pun intended) Pursue a definitive diagnosis. I am also in the midst of my search for a definitive diagnosis. I haven't yet availed myself of Dr. Fine's services. But I've done some reading on him. He strikes me as an ethical man. Again, I have no facts to back this up. Just my "gut" instincts. hehehe

[aikiducky]

You said you have been gluten free for three months now? How are you feeling now? Are you looking to get tested to keep yourself motivated on the diet, or are you having continued symptoms that aren't getting better?

I think Enterolab even says on their website that they cannot diagnose celiac, only show if you react to gluten in some way or another. I know there are a couple people here on this board who tested positive with Enterolab but were able to start eating gluten again later when an underlying condition was treated that had made them gluten intolerant (I think Lyme in both cases?). So their Enterolab results in themselves were accurate, but their gluten intolerance was temporary, and they needed to get other testing done to get to the bottom of their health problems. I think this is some of the controversy surrounding Enterolabs testing?

It's a hassle but you really need to get all the test results of all the tests and you have had done to see them for yourself.

I'm afraid the only way to get accurately tested for celiac is to eat a good amount of gluten for a significant amount of time before the tests. Otherwise you risk false negatives. So you need to think about whether or not you want to do that.

Pauliina