Well All, This Is It.

[Mal]

This is the general letter I sent out today.

____________________________

Hello Everyone.

Some of you I haven

[Viola 1]

I'm so glad they finally found your problem. I have an Uncle with Crohn's disease, and he has done well on the treatment.

I hope that you have the same response with it.

Good Luck!

[plantime]

Follow the treatments and get better! I'm so glad you got a diagnosis!

[Ursa Major]

Mallory, did you have the endoscopy AFTER being gluten-free for three months? If that is the case, any sign of celiac disease might have healed in that time, even if there was damage to your villi before. So, your endoscopy really means nothing, other than that NOW there is no damage to your villi.

Anyway, it has been found that one of the very best treatments for Crohn's disease is, like it or not, a GLUTEN FREE DIET. In fact, it has been found that all bowel diseases are helped by being gluten-free, even if the person does not have celiac disease.

I just thought I'd throw that out for your benefit. Because your doctor doesn't seem to know this information.

[ravenwoodglass]

I agree totally with Ursa. If you were gluten-free when you we tested that will skew the results. Also there is no way you doctor can tell by just looking whether you also have celiac.

[Ursa Major]

You are right, Ravenwoodglass, I didn't even see that. Doctors CAN NOT see with the naked eye if there is villi damage, it has to be examined by a microscope. Mallory, I really hope they took plenty of biopsies to look at to be sure.

Also, before you gave up, did you try going dairy and soy free? Many of found that just being on a gluten-free diet was not enough to make them better.

And I also had the joint and muscle pains returning in full force, making me utterly miserable at around the three month mark. That didn't mean I was not intolerant to gluten. It meant that I was intolerant to a lot of other things as well as gluten.

It also has been found that Crohn's disease can be CAUSED by celiac disease! Even if you don't now and possibly never had celiac disease, that doesn't mean you aren't intolerant to gluten. Unless you got tested by Enterolab, you really don't know, and you don't know your genes, either.

In order to make sure the gluten-free diet works, you have to give it at least six months to know for sure. Of course, most doctors can't be trusted to know that. Most doctors can't be trusted to know anything, for that matter.

[spunky]

I hope your diagnosis and treatment will help you see much improvement in your health soon. Keep in mind that sometimes even gastroenterologists get many of these diseases confused, celiac, Crohn's, ulcerative colitis, according to Dr. Peter Green's CNN interview. So, well I hope you are better real quick and find you can eat anything you want. If you are ever unsatisified with the results of your treatment, though, don't forget that gluten free, and probably dairy free too, might still help you if you find yourself needing more help at any point along the way.

Wishing excellent health to you!

[rez]

Good luck and I agree w/ previous posters. I have a friend who has a son w/ Crohn's and she said he follows a gluten and casein free diet. Keep an open mind. Good luck again.

[Carriefaith]

I'm glad that the doctors have made a diagnosis. I hope that you start to feel better soon.

I have read that chron's can be put into remission by diet without the medication. Some of those meds like predinose can be really tough on the system (I've been on predinose before and it was a werid little drug). The diet I've read and heard about that works for some people with chron's is the Specific Carbohydrate Diet. If you find that the meds are too much then it is an option to look into.

[rutland]

I agree with Ursula about the unreliablilty of doctors and their "gold standard tests". Unfortunately if youve been on the gluten-free diet for even just a few weeks, the biopsy cannot rule out celiac disease. The cells of the intestinal tract replace rapidly, thus if youve been gluten-free for even a short amount of time, if could of been enough time for you to heal some of the damage done to the villi. I really wouldnt trust the doctor on this one, its unfortunate, but they just dont know enough about diet and the detrimental effects it could have on the GI tract. Oddly, their training in nutrition is very limited.

There is a good book called dangerous grains, it may give you some good insight about why their is such a gray area in regards to proper diagnosis of this condition. Not only that, even if you do not have celiac disease, that doesnt mean that your not gluten intolerant or sensitive.

Follow your intuition, listen to you body and notice how you feel after eating gluten foods or any food in that matter. If you feel like something isnt right, check out a diagnosis from enterolab, or do the elimination diet.

Good luck to you

Steph

[blueeyedmanda]

Good Luck, glad you finally got an answer

[Fiddle-Faddle]

Hi, Mallory,

I hope things get better for you quickly!

I was just wondering--were you originally diagnosed by bloodwork? Because that is a far more accurate diagnosis of gluten intolerance than an endoscopy--the endoscopy only shows intestinal damage, and, unless you were eating a lot of gluten for MONTHS before your endoscopy, it would be negative for celiac even if you were celiac!

As far as I can tell, celiac disease is just what happens when you have gluten intolerance and continue to ingest gluten.

This may or may not have anything to do with Crohn's disease. I'mnot trying to say your doctor is wrong about that, but I do agree with everyone else that gluten-free (and, unfortunately, probably casein-free, too ) is probably the best option for anyone with Crohn's, anyway.

Is your doctor only diagnosing you with Crohn's because he feels that he eliminated celiac as a possibility? Or were there other parameters he was considering?

Either way, keep us posted on how things are going for you. I hope you enjoyed that McD's!

[henrietta]

I hope this works, the screen has shown your post too!

Firstly I am glad you have a firm diagnosis, I too endured (!) the camera up my nether regions but mine showed I was in excellent shape, something I wasn't expecting after the symptoms.

I think if I were you I would still stay clear of gluten for a few months, it obviously doesn't agree with your body or it wouldn't make such strenuous efforts to get rid of it quickly.

I know since changing my diet my toilet habits have stabilised and the bloated sort of exhausted feelings have lessened.

I would also try aloe vera tablets, I take two large ones per day, and I swear they soothe any inflammation.

I hope you get some relief soon, do ome back and tell us what happens won't you?