woolwhippet

Thanks again. I am struggling with the dairy thing--you are right, it's eveywhere!

Thanks--this is very good advice esp about how to introduce gluten. I honestly was ready to do the pizza thing.

I notice that many here that many people are gluten free regardless of test results. I find this very inspiring and reassuring.

Lenore

Well, I think the blood test is about as accurate as reading tea leaves.

HA! That made me laugh!

Well, my blood work shows that gluten is supposedly not the cause of my illness (my result was 5 and positive was greater than 20 and apparently the test is 97% accurate). I was SO positive it was gluten because I responded so well to the diet (butt rash cleared up, no brain fog, and NORMAL BMs).

The doctor suggested it may be dairy I am reacting to. She told me she wouldn't rule out gluten 100% yet but to stay dairy free for three weeks and then reintroduce in small amount to see effects.

My own plan is to reintroduce gluten and go dairy free. If I stay healthy while eating gluten then it's dairy. But if I sink back into losing weight and my itchy butt rash comes back then I guess I'll have my answer.

Thanks to all of you for your help. I have so enjoyed reading your posts and have learned a lot from reading this baord.

Lenore

Thanks again everyone. I think tht when I eat gluten my mind goes into overdrive as well!

Thank you so much. Those were the words I needed to hear.

I am doing great on the diet and have had fun cooking up new foods but sometimes I still question my diagnosis. For example, yesterday I had myself convinced that a little bit of gluten would be fine. So I ate a lovely steaming hot maple breakfast sausage. Now today I am paying the price.

One sausage made me sick and now I am realizing the depth and breadth of this disease.

On one hand I am so releived to know what was making me sick and on the other I am starting to feel pretty annoyed and maybe even angry.

Part of it is due to lack of support.

My friends and family really have no idea what this all means or exaclty how sick I have been. When I try to talk to them about what's been going on for me I can see that they really can't empathize and don't understand the learning curve I am on.

I have really tried hard to put on a brave face and make this whole thing seem like a natural part of life. But the diagnosis is new and I am realizing that I am emotionally more raw than I thought.

Has anyone ever sought proffessional counselling?

Lenore

To all the women out there,

Have any of you noticed an increase in severity of symptoms depending on where you are in your monthly cycle?

At my last dr appt, he said that as hormone levels go up and down during the cycle, you can definitely see an increase in severity of symptoms - this has proved to be true for me.

I keep note of how I'm feeling regularly and have noticed this pattern.

Thanks, Lisa

YES! This is very true for me. This period coming up will be my first 100% gluten-free. I am curious to see if symptoms reappear to the same degree.

Lenore

I did it. I finally cleared all gluten from my diet. No soy sauce, salad dressings etc. Today I was rewarded with my first normal (as is solid) bm since before summer. I still can't tolerate milk or citrus in any great quantity.

I can't tell you how happy I am to feel well after so many months of feeling so tired and so depleted.

I will not have test results until mid April. I hope they confirm what I know because my parents think it's all in my head (as if I wanted go to great lengths to eat a special diet!).

Anyway, who else would I tell this success to?

Lenore

Funny you should say that about beans because that's what I have discovered too. Beans, peas, citrus fruit, and dairy still send me running with the big "d". I was starting to doubt that gluten is the problem and had almost convinced myself that I had a legume, citrus, and dairy intolerance instead! I don't have my test results back yet so I am playing these lovely head games....

Lenore

Thanks all. As usual, excellent advice. I can't wait to have that needle in my arm tommorow!

You have my deepest sympathies with the food diary thing.

I can't make head or tale of mine either. I'm sitting here this very evening plotting the quantities of every food group I've eaten into an excel graph and comparing them to my various symptoms. Can I see patterns? Yes hundreds, and very pretty they are too. Beyond that....

Excel spreadsheets! I love it!

Lenore

Last week I swore I as gluten intolerant because after feeling terrible for months I went gluten light and felt great. However, my biggest symptom (loose, bulky, greasy stools alternating with watery ones 2 to 5 times per day) only improved in that the watery ones stopped. BUT I knew I was getting some gluten in trace amouts so I thought that was the cause.

Fast forward to today. I have been eating gluten in larger amouts than ever because I have my doctors apt and bloodwork tomorrow. But instead of feeling much worse, I only felt bad for the first two days, now I feel pretty normal. Stools have not changed but a little more crampy.

I am finding my food diary really hard to interpret. Could gluten still be the cause? Do I still push for the celiac blood panel? OR MAYBE i AM CRAZY!

Thanks for your patience! I swear I am not the hypochondriac type but I am starting to feel that way.

Lenore

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

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