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


woolwhippet

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woolwhippet Explorer

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


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AndreaB Contributor

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 Contributor
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 Collaborator

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 Explorer

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 Collaborator

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 Collaborator

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!


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    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
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      You state in an earlier post that you don't have celiac disease. Here in this post you state you will "be doing another test". What will this test be looking for? What kind of celiac disease testing have you had done? If you have used a Entero Labs it sounds like you have had stool testing done for celiac disease which is not widely accepted as a valid celiac disease diagnostic testing method. Have you had blood antibody testing for celiac disease done and do you realize that for antibody testing to be valid you must have been eating generous amounts of gluten for a period of weeks/months? 
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    • Rejoicephd
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    • catsrlife
      Back at the end of July I got this rash on both of my forearms. It started on my right and continued to the left. It was on the top and side. The rash has bumps that would pop with clear liquid if scratched. They would almost crystalize and scab up. They reminded me of chicken pox. They would scab for weeks and not heal much at all except for the blood clotting. If the scab was scratched off, it would bleed and bleed until it scabbed up again. The skin has lost its pigment where the scabs are. I figured it was probably either the plant I had trimmed around the 15th or some reaction to the magnesium complex I was taking or an allergic reaction to the asthma meds I was on. I stopped the asthma meds and the magnesium. The rash seemed to get better but when I took the asthma meds it flared up again so I went to the urgent care as my doctor was unavailable. The UC doctor said it probably wasn't the meds and asked about my diet. I said I was strict keto. I usually am, but there is a story around this. I feel amazing on keto. When I eat sugar, wheat, and starchy veggies I feel horrible. Blood sugar goes up, IBS type symptoms, brain fog, etc. But I have a horrible addiction to carbs so I blow it sometimes and after Mom died in 2023, I fell off the wagon. No rashes, just weight gain. I finally went back on keto and then around that time had a piece of pizza (or so, it's hard to stop the carb rush.) So I was strict keto, off and on. She ignored that and prescribed some allergy meds. It didn't go away.  What was happening by then was that the rash was now on my upper elbows, both of them, on the back of my arms. It starts with a very itchy bump, spreads around it and sometimes just burns like crazy and other times just itches. Then it started on the sides of my knees on the oustide, a little bit down the sides of the calves. It's not as bad there as it is on my arms even though it comes and goes (and so does wheat in my diet.) I then got three tiny blisters on each hand, 3 on the insdie of my index finger on the right hand and 3 on the inside of middle finger of my left hand. There is still a little scab there even though it was two weeks ago. No more have appeared on the fingers. But right now the back of the arms above my elbows are starting to itch. At some point I started to think mites from the possum that was sneaking into our house but it's been 3 months and they would be dead already. It wouldn't be from humans because I don't go near any humans although I did take an Uber to the doctor and the bus back. Plus, it's symmetrical. It starts on one side and is almost identical on the other.  I did my DNA with Ancestry and MyHeritage. I don't have the HLA-DQ2 or HLA-DQ8. I do have HLA-DQ2.2. I took the blood test but it was negative. Then again, I don't eat wheat every day. I rarely eat it except for lately when I've been preparing for the blood test if I have to take it again. I don't like to. It makes my joints hurt, gives me brain fog, stomach problems, I sleep in the middle of the day, etc. I have a doctor appointment tomorrow. I hope that she will be more serious about this than the UC doctor was.  So I have no idea. With my luck they'll magically disappear before the doctor appointment. That's what happens with everything.
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