I'm New, Confused, And Hoping For Guidance!

[woolwhippet]

Hi,

I am 35 years old and I can't believe I am here. Since last August I have experienced what I now know is malabsorption ("D" about three or four + times per day). I was also tired and irritable. I kept thinking it was coffee. Then I finally gave up caffine altogether and I realized I was wrong because the "D" never stopped. Then I gave up milk. Then I took fibre supplements. Then I reduced the fibre in my diet. Still sick.

So after playing around with cutting out and reintroducing gluten I now realize what has been making me sick. I aso now know that this pesky rash on my scalp and butt that I have had since university may be DH.

I should have realized sooner considering I have three cousins and an Uncle who are diagnosed celiacs. My Grandmother on the same side had rheumatiod arthritis.

I want to make the diagnosis official. I see my family doctor next monday. I am worried she won't listen. I am worried that perhaps I am crazy and this is all a product of my imagination. I am worried it's not celiac and something much worse.

My big question is: exactly how much gluten do I have to eat per day to get a positive test? Right now I am only eating about 1 piece of bread per day and whatever hides in salad dressings etc. How long does it take for a body to eliminate gluten? I need to do my best to test positive because I need to solve this mystery.

My second question: will I gain or lose weight after being gluten free? I have been told I could gain 20 pounds! Problem is, if anything, I could stand to lose a few pounds!

Third question: Anyone experince an improvement in joint pain symptoms after being gluten-free?

Thanks for listening. Felt good just to type this and send it out into the wide world.

Lenore

The Wool Whippet

In Victoria BC

[AndreaB]

Welcome Lenore!

I'm not an expert on the quantity of gluten consumed.....but I think I've read 3-4 slices of bread (equivalent) for 4-6 months. Hopefully someone else will come along and clarify that.

It does sound like gluten could very well be the problem. If you still have your rash, then maybe they could biopsy that.

As far as weight gain/loss. I've lost 10 pounds roughly. It fluctuates but unless you eat a lot of gluten free goodies you should be ok.

I had joint pain that went away but I don't know if it was soy or gluten. I went off of soy Feb 06 and went gluten very lite April 06, going gluten free June 06.

[VioletBlue]

My big question is: exactly how much gluten do I have to eat per day to get a positive test? Right now I am only eating about 1 piece of bread per day and whatever hides in salad dressings etc. How long does it take for a body to eliminate gluten? I need to do my best to test positive because I need to solve this mystery.

My second question: will I gain or lose weight after being gluten free? I have been told I could gain 20 pounds! Problem is, if anything, I could stand to lose a few pounds!

Third question: Anyone experince an improvement in joint pain symptoms after being gluten-free?

Thanks for listening. Felt good just to type this and send it out into the wide world.

Lenore

The Wool Whippet

In Victoria BC

Hi Lenore. I too could stand to loose a few pounds. The biggest improvement I've seen to so far is that the bloating has mostly stopped. Clothes fit better now because I'm the same size from one day to the next, LOL. I've lost a few pounds since being diagnosed. I think there is something to the idea that there's a link for some people between being overweight and being Celiac, but I think there's also a lot more that goes into it than that, so I think it depends on you. For me there seems to be less of an urgency and importance surrounding food now. It is as if that little something in the back of my brain that urged me to eat has calmed or quieted down. I can't explain it any better than that. Eating is become more of a choice if that makes any sense. Course that could just be because so much of what I used to eat isn't an option and I'm still struggling to find a way to live day to day and figure out what is going to work for me.

I used to periodically get these attacks of all over joint pain, I'd say two or three a month. My entire body just seemed to ache. I haven't had one of those in well over a month. I've been gluten free about three months now. The lower back pain that had become almost constant has also gone away.

I wish you luck in finding a diagnosis. I know what it's like to wander through the medical system seeking answers.

violet

[Ursa Major]

Hi Lenore, and welcome to these boards.

It sure sounds like you may have celiac disease. That you feel better off gluten confirms that. How long have you been eating gluten-light? If it has been no more than two weeks, you should be okay for the tests. But if you truly want an official diagnosis, you need to start eating more gluteny stuff again.

On the other hand, even if your tests come back negative, you should go 100% gluten-free afterwards. Because the tests aren't all that reliable, there are plenty of false negatives. Nobody can stop you from eliminating gluten if it makes you feel better!

Yes, I also had the terrible joint pains. In fact, lots of people with celiac disease have them, and eliminating gluten is often the only thing that will make them go away.

As to weight gain, that is not necessarily going to happen. I lost weight when I started the gluten-free diet. If people are seriously underweight they'll obviously gain weight, and should. For people who are overweight (and unexplained weight gain is a very unrecognized, but common, symptom of celiac disease and can be a sign of malnutrition, too) it usually goes the other way.

If you still have those rashes, you may also want to see a dermatologist and have it biopsied. If the biopsy is positive for DH, you automatically have a firm diagnosis of celiac disease.

[woolwhippet]

Hi everyone, thanks for the welocme and for taking time to answer my questions. I am releived to hear about the joint pain easing up once off gluten--it's so tiresome!

So, do I need to ask my doctor for the blood panel and a refferal to a dermatologist? If the blood work comes back positive can I skip the biopsy? I am in Canada and have been told there is a long wait to see a specialist. Can I eliminate gluten before the biopsy?

The weirdest thing for me is realizing how hungry my body has been. I was at the point where I didn't ever feel content after a meal--more anxious. This weekend, after eating gluten light, I had that content feeling for the first time in years!

I am back to eating gluten again and the brain fog has already set in.

Even if I am not celiac, I just don't think I was meant to eat gluten.

Thanks again.

Lenore

[Ursa Major]

Lenore, I know that to see a specialist in Canada can take months (when I needed to see an orthopedic surgeon last time, I got an appointment EIGHTEEN MONTHS down the road, fortunately my chiropractor figured out the problem before that).

It seems that it is a much shorter wait to see a dermatologist. Too bad the one I saw first of all triple-booked people (giving everybody about three minutes of his time, and I sat there for THREE HOURS waiting to be seen), but was clueless as well. He took the biopsy from a rash that was almost healed (useless), and he took it right out of the middle of the rash (you're supposed to take it BESIDE the rash). Needless to say, it came back negative.

If your blood work comes back positive, and you notice a huge difference on the diet, you really would have a diagnosis. I personally would skip the biopsy. Of course, I skipped all of the tests, since the huge difference the diet made was good enough for me, and I had no intentions of making myself violently ill again. But it is obviously your choice, everybody is different.

If you decide to go for the biopsy you will need to stay on gluten until after the biopsy, because the gluten-free diet will heal your intestines, and the biopsy would end up being a false negative.

[Mtndog]

Hi Lenore- Welcome to the board. It sounds like you've figured out a lot already. If you do have DH, the skin condition associated with celiac, then hopefully they can just biopsy that and skip the endoscopy.

The good thing is that you know you have celiac in your family, feel better without gluten, then you know to stay off.

There were plenty of times before I had an official diagnosis when I thought I was crazy. If you go to Open Original Shared Link fill it out and bring it when you go to see your doctor.

I thought I was crazy; my doctor didn't at all!