I Feel Like An Anomoly

[gluten-freedom]

Hello all,

I'm new to celiac.com, but not at all new to celiac and being gluten-free.

I was initially diagnosed with microscopic colitis back in 2002 after a colonoscopy and biopsy. I think it was a bit of an extreme measure, considering that my only symptom was/is loose stools twice a day. Nothing dramatic. Also, I hate the term "microscopic colitis." It's more of a description than a diagnosis. Anybody out there with me? They tried to put me on anti-inflammatory medicines, but my liver didn't seem too happy about that, so we just ditched it. I was sixteen.

Anyway, after an unhelpful visit to another gastroenterologist 5 years later, I started seeing a Naturopath "doctor." She was super helpful to some family friends of mine, but for me, she was way over the top. She had me off of too many foods to list here. I did her diet, faithfully, for 10 months. I was very strict about it. She had me really scared for my life, so I never even thought about "cheating."

The good thing that came out of my time as her client was that I did the Enterolabs testing. I came out WAY positive for gluten intolerance in that test. I also did blood testing that showed some low nutrient levels. I also got REALLY good at reading food labels for sneaky stuff.

About two years ago, I took all my materials and results from the Naturopath doctor and the gastroenterologist from 2002 to my current general practitioner. I love my family doctor. We went through everything, and he told me what was legitimate and what was not. (In his words, my Naturopath doctor was, "fine, she was just treating a lot of healthy people.") He confirmed that I must be a celiac, based on the low nutrients, and the extremely high levels of gluten antibodies. So I went back off of just gluten.

Six months later, there was absolutely zero change. Not even a little extra energy. Nothing. I told my doctor, and he told me that going off of gluten doesn't cure it. It just manages symptoms. So if it didn't managed my symptoms, I didn't have to avoid gluten.

Yikes!

This past summer I did a bunch of research that I had been to scared to do in the past. I now know that, regardless of the presence or mildness of my symptoms, eating gluten damages my small intestines and increases my risk of a host of other illnesses.

My husband and I finally were able to get back on insurance, and I went back to my family doctor this past February. He seemed much more knowledgeable this time. I told him about my research and my concerns, and he agreed emphatically. He absolutely recommended that I stop eating gluten.

But here's the catch - he doesn't think I need to do anymore testing. No biopsy. He considers the testing I've already done to be conclusive. Now, I LIKE the idea of this, but I want to do what is BEST, not what is EASY. I'm already back off of gluten, which can skew the biopsy, but I want to know what any of you think.

I feel like an anomaly, because of how mild my symptoms are. Also, the constancy of my symptoms is weird to me. They don't change, no matter what I do or do not eat. This is probably because of the microscopic colitis. I also don't know about the whole MC thing, because all that really means is that there's teeny tiny inflammation. For unknown reasons. Not helpful! My guess is that I will have to be gluten-free for a very long time for all my villi and inflammation to chill out and repair. And THEN I might see a change in symptoms. I think... ???

Any thoughts would be awesome. Sorry that was a chronicle!

~HC

[psawyer]

Welcome to the board.

Time to heal depends on many things, but if you are seeing no progress at all, two possibilities come to mind.

There may still be some hidden gluten sneaking into your diet.

You may be intolerant to something else besides gluten. Many have to cut dairy, at least during the healing process. Soy is another common intolerance.

I don't know enough about microscopic colitis to know what impact it may be having.

[nora-n]

Hi, I have some thoughts:

Microscopic colitis is another entity, and lots of those with microscopic colitis are gluten intolerant too.

But I read an anrticle in The Lancet where they deny any connection.

Ther are other papers out there that say there is a gluten connection to microscopic colitis.

And, Dr, Kenneth Fine of enterolab was working with microscopic colitis when he got aware of the gluten connection, and then designed the enterolab tests for gluten intolerance. That is why there were so positive results with enterolab.

Now I aread other forums too, and one person finally got 0 antibodies after some years after also going off certain other carbohydrates, and the diet is the SCD, the Specific Carbohydrate Diet.

She kept having positive antibody tests bespite of being very very strictly gluten free and milk free.

But after a year on the SCD diet finally the rest of the antibodies disappeared.

Now if you google the diet, you see that a lot of severely ill people have phenomenal results with the diet.

Before, they had to have a piece of intestine removed every couple of years or so.

On the SCD diet, they went symptom free and did not need any more surgery.

There is a SCD thread here in the Other food intolerance folder.

nora

[gluten-freedom]

Hi, I have some thoughts:

Microscopic colitis is another entity, and lots of those with microscopic colitis are gluten intolerant too.

But I read an anrticle in The Lancet where they deny any connection.

Ther are other papers out there that say there is a gluten connection to microscopic colitis.

And, Dr, Kenneth Fine of enterolab was working with microscopic colitis when he got aware of the gluten connection, and then designed the enterolab tests for gluten intolerance. That is why there were so positive results with enterolab.

Now I aread other forums too, and one person finally got 0 antibodies after some years after also going off certain other carbohydrates, and the diet is the SCD, the Specific Carbohydrate Diet.

She kept having positive antibody tests bespite of being very very strictly gluten free and milk free.

But after a year on the SCD diet finally the rest of the antibodies disappeared.

Now if you google the diet, you see that a lot of severely ill people have phenomenal results with the diet.

Before, they had to have a piece of intestine removed every couple of years or so.

On the SCD diet, they went symptom free and did not need any more surgery.

There is a SCD thread here in the Other food intolerance folder.

nora

Thanks for the thoughts and input! I appreciate you taking the time.

The thing about the SCD is that, first, I'm not "severly ill." My symptoms are super mild! No one would know I was sick if it weren't for my diet.

Second, in what I fondly refer to as "my crazy-diet" under the Naturopath doctor, I was off of everything you can think of. Gluten, dairy, soy, eggs, yeast, sugar, peanuts, chicken, any non-organic meat or fish, beans, potatoes, whole kernel corn, rough greens/veggies (lettuce, brocolli, cauliflower, etc), most fruits (only mango, berries, apples), anything too acidic (like cooked tomatoes), and much more. The only things I could drink were homemade smoothies, Pellegrino, and either Fiji or Penta brands bottled water. All that to say that, if I had another allergy or intolerance, I think that diet would have eliminated it.

My best guess is that the lip products, hand lotion and cosmetics that I used at the time had gluten in them.

[ravenwoodglass]

Thanks for the thoughts and input! I appreciate you taking the time.

The thing about the SCD is that, first, I'm not "severly ill." My symptoms are super mild! No one would know I was sick if it weren't for my diet.

Second, in what I fondly refer to as "my crazy-diet" under the Naturopath doctor, I was off of everything you can think of. Gluten, dairy, soy, eggs, yeast, sugar, peanuts, chicken, any non-organic meat or fish, beans, potatoes, whole kernel corn, rough greens/veggies (lettuce, brocolli, cauliflower, etc), most fruits (only mango, berries, apples), anything too acidic (like cooked tomatoes), and much more. The only things I could drink were homemade smoothies, Pellegrino, and either Fiji or Penta brands bottled water. All that to say that, if I had another allergy or intolerance, I think that diet would have eliminated it.

My best guess is that the lip products, hand lotion and cosmetics that I used at the time had gluten in them.

I think you hit the nail on the head with your last sentence. Change those products and see if it makes a difference.

It isn't unusual for some of us to have symptoms that are more on the mild side, some folks have no symptoms at all and are discovered when doctors are looking for something else.

The villi have a pretty quick 'turnover' rate but it can take a while for things to repair completely.

Hopefully you will be feeling much better soon.

[ezgoindude]

Ugh! I wish she was still posting on this website!! I have a low level of inflammation as well,  I'm frustrated to the point of taking immunosuppressants!  But what if its gut flora? then do I take prednisone? Even the intro stage of SCD is frustrating because that's how I found out I can't tolerate carrots, even if cooked for hours.  ANY carbs are a problem, but not raw salads? I just eat chicken for the rest of my life?!?!??!

 

WTF I JUST WANT TO RANT SORRY  =/