Confused! Positive Blood Test For Celiac's

[nichol]

Hello everyone,

I am so glad to have found this group. A few months ago I developed a sudden lactose intolerance which led my doc to the Celiac bloodwork which was very positive, he also tested for Anemia, so I am officially an Anemic/Celiac. My doctor simply said to go gluten-free, made me an appointment with a so-called dietician, prescribed 2000mg Calcium, 2500mg Vit D, and 200mg elemental iron. I researched Celiac's a bit, had my "appointment" with the dietician who simply asked me if I had any questions. I really didn't at that time, I found great on-line resources for the gluten sources, and I have never really eaten any obvious gluten sources in the past. I never liked them... or so I thought. I was very frusterated by the experience with my doctor. Everywhere I looked said that I should have a referral to an Gastroenteroligist. So I made another appointment to my GP and he laughed at me when I asked. He laughed harder when I suggested that perhaps there was a whole bunch more testing that should be done... ei bonescan, liver panel, vit & min etc. I had done about 40 or 50 hours of research on Celiac's just so I could understand what was happening to me, and I felt angry with him. He did put me on a referral list, which I am grateful for, but I can't believe how I was treated. I felt like telling him that the Earth is not flat. (Which is where his knowledge of Celiac's is equated to) This is horrible to me, just needed to vent on that a bit. I feel like I have to have my own doctorate to be able to tell my doctor how to proceed.

Here is my real reason for posting.

Series of questions, comments

1. When I am detoxifying my kitchen/home from gluten, should I purchase new cookware? I think that the plates will be fine, but what about baking pans with the lips, I read that even small gluten deposits in these nooks and crannies can be toxic. I just don't know how deep to go with this all.

2. I keep reading that gluten does not absorb through the skin and make-up with gluten is fine, HOWEVER; some make-up/lotions make me red and itchy and I want to rip my skin off. So my thoughts on this is that there is a possibility of gluten poisoning through either absorbtion or cross contamination.

3. I am ALWAYS hungry. I can eat a large meal, be hungry an hour or two later, I wake up in the middle of the night, I am hungry. Before I was taking the iron my bowel movements looked like my food was not being digested thoroughly (EWWWW!)Now it just is black, so I can't tell, not bloody have had occult samples done, just iron contaminated. Plus I seem to be absorbing calories fine. I had a little beautiful baby girl in August, I couldn't breastfeed her, she was not growing at all, now i know why, after I had her I was about 155 2 weeks post-partum from 140 pre-pregnancy, I am up to 180 - 190 depending on the week. I tried a 1300 cal/day diet combined w/exercise (pre-Celiac diagnosis) was 170 but my weight plateaued. Now I read that I should not be restricting calories as this will slow down my metabolism, I should not exercise to exertion as it will slow down my metabolism. I don't want to be a size 16/18 anymore, I am so frusterated!! Any recommended reads or articles, I am so desperate right now!

4. Has anyone noticed a problem with actual wheat plants? LIke should I be jogging in the fields, riding horses, etc... I live in a rural area with alot of wheat farming, and have read that harvest time = H3LL for some, and God knows that I do not need any further respitory damage as I have had pnemonia several times in the last 3 years, anyone else have an insight on this?

Any links to articles or books would be greatly appreciated, I am trying to educate myself BEFORE my GI appt just so I can make sure that they are doing what they should be doing.

[sa1937]

Welcome, Nichol! I've learned more from this forum than probably anywhere else.

A good book I would highly recommend is Celiac Disease: A Hidden Epidemic by Dr. Peter Green, director of the Celiac Disease Center at Columbia University. A new version came out earlier this year.

There are also some good websites like the May Clinic Open Original Shared Link, University of Chicago Medical Center Open Original Shared Link, Celiac Sprue Assn. Open Original Shared Link plus a host of others than I can't recall at the moment. You might google celiac disease for lots more.

I did buy some new things for my kitchen including a toaster, wooden spoons, cutting boards, colander, nonstick cookware as mine were old and crappy, etc. I did not get rid of my good set of Calphalon cookware as it can be scrubbed well with Comet and a Scotch Brite pad. Basically think of things you could never get clean. Plus I got a few other things just because I deserve them. lol

As far as make-up is concerned, I made sure my lip balm is gluten free as that is one thing I use that can be ingested. I really don't wear lipstick but that would be another one. But if you're reacting to things you use on your skin, obviously you have a problem and need to change brands. It could even be an allergic reaction to certain ingredients. So far I haven't had a problem with my shampoo, conditioner, hairspray, etc.

Hope this helps. I know it's overwhelming. Sending good wishes your way! I'm sure others will have far more suggestions...

[nora-n]

When I was back on a gluten challenge, I was hungry all the time too.....

By the way, if you are gluten free now, they probably can not do any new celiac tests on you. You must still be eating lots of gluten for the blood tests and the biopsy. If you want more testing, that is.

[ciavyn]

I probably should keep my trap shut, because I don't have all the medical stuff on celiac's down yet...but I would recommend exercising and eating sensibly, regardless of what else you may have read. Exercise is good for so many body processes, and as someone who has a hard time regulating her weight, I totally understand your frustration. I'm small, but only because I work really hard at it. I can balloon up the scale very easily and quickly. While your system gets regulated and repairs itself, your body may not respond the way you want it to all the time, but it will eventually, and the added physical ability and health will be worth it.

It's so easy to eat healthier when you are gluten free...you'll find it just comes with the territory, especially in the beginning when baking is a bit terrifying!

[nichol]

I probably should keep my trap shut, because I don't have all the medical stuff on celiac's down yet...but I would recommend exercising and eating sensibly, regardless of what else you may have read. Exercise is good for so many body processes, and as someone who has a hard time regulating her weight, I totally understand your frustration. I'm small, but only because I work really hard at it. I can balloon up the scale very easily and quickly. While your system gets regulated and repairs itself, your body may not respond the way you want it to all the time, but it will eventually, and the added physical ability and health will be worth it.

It's so easy to eat healthier when you are gluten free...you'll find it just comes with the territory, especially in the beginning when baking is a bit terrifying!

Unfortunately, I still am eating gluten as I am awaiting biopsy, so the hunger cycle continues. I'm not saying that I eat chips and dip, heavy pastas, etc... all the time, I just eat all the time. Calories still seem to be absorbed in my case. If I should be eating 1800 cal/day and I am eating 3000 b/c of my extreme hunger and cravings from nutrient deficiencies I am overeating!! Even if it is fruit and salad it's still calories. As for exercise, I try to walk as much as possible, however with anemia I get tired after 10 blocks. Vaccuuming my house and normal housework is exhausting! Caring for a baby that crawls around all day getting into trouble is exhausting! If I don't eat when I am hungry, I simply can't FUNCTION! I can't sleep at night, muscle twitches, RLS, my left eye has been twitching for a month, it's all combining to drive me batty! I am up all hours of the night in the bathroom, I wake up tired, but I can't sleep. I still have responsibilities to take care of, I feel like I am on auto-pilot. I'M ANGRY!!! I'M IRRITABLE!!! Before my diagnosis and worsening symptoms; until I was 7 months pregnant I hiked/jogged 10k's 5 or 6 x's per week. UP MOUNTAINS!!! I was in awesome shape, not just the proper size, I was fit and in shape, an athelete. I am frusterated by my body right now. It has turned against me. I want myself back and the period of time awaiting biopsy still eating gluten is horrible!! I know that it will get better with time,I guess that in the shadowed valley awaiting further medical treatment I really just wanted someone to tell me that what I was experiencing was normal and everything would get better. A shoulder to cry on that understood. Because no one understands in my real life. I don't look sick, so why am I complaining.

[nora-n]

Yes, gluten on skin and in the fields is not okay for those who are very sensitive.

There are some very sensitive people at the delphi celiac forum too, one of them is a scientis, researching glf food an she has to handle wheat sometimes during testing. She has to wear full protective garments....

You really sound celiac.

If you are back on gluten for too short a while, the biopsy might be negative.

The last recommendation I read, was at least 0,5 grams gluten per kg per day, that is a lot.

And they recommend at lest 6 weeks, better at lest 3 months back on gluten.

I was negative after 5 weeks back on gluten.

nora

[nichol]

Yes, gluten on skin and in the fields is not okay for those who are very sensitive.

There are some very sensitive people at the delphi celiac forum too, one of them is a scientis, researching glf food an she has to handle wheat sometimes during testing. She has to wear full protective garments....

You really sound celiac.

If you are back on gluten for too short a while, the biopsy might be negative.

The last recommendation I read, was at least 0,5 grams gluten per kg per day, that is a lot.

And they recommend at lest 6 weeks, better at lest 3 months back on gluten.

I was negative after 5 weeks back on gluten.

nora

Thanks for your reply Nora,

My family doctor told me to start a gfd immediately after blood tests, I did that for 1 week, during this time I did some research of my own and realized that I should maintain my regular diet and switched back to eating gluten. So I don't think that will mess up my biopsy. What I really want from the GI is the referrals to a nutritionist/dietician who has worked with Celiacs before. All this info has really opened my eyes to look into myself and listen to my body. It's very scary some days, and others not so much. Day by day and step by step I guess. I really appreciate the feedback from everybody. It's very nice to not feel so alone.

[ravenwoodglass]

Thanks for your reply Nora,

My family doctor told me to start a gfd immediately after blood tests, I did that for 1 week, during this time I did some research of my own and realized that I should maintain my regular diet and switched back to eating gluten. So I don't think that will mess up my biopsy. What I really want from the GI is the referrals to a nutritionist/dietician who has worked with Celiacs before. All this info has really opened my eyes to look into myself and listen to my body. It's very scary some days, and others not so much. Day by day and step by step I guess. I really appreciate the feedback from everybody. It's very nice to not feel so alone.

I hate to say it but too many times a visit with a dietian for the purpose of celiac education is less than worthless. A great deal can be learned here and at other celiac specific sites.

One thing I want to stress to you is to mention that your getting up sick at night, make really sure the doctor hears this. I suffered for years and was told it was IBS. It was only when I was finally diagnosed and sent back to the GI for confirmation that he actually listened and said 'Gee IBS doesn't wake folks up at night, why didn't you tell me this before?'. I had over and over and over, he just didn't listen.

[nichol]

I hate to say it but too many times a visit with a dietian for the purpose of celiac education is less than worthless. A great deal can be learned here and at other celiac specific sites.

One thing I want to stress to you is to mention that your getting up sick at night, make really sure the doctor hears this. I suffered for years and was told it was IBS. It was only when I was finally diagnosed and sent back to the GI for confirmation that he actually listened and said 'Gee IBS doesn't wake folks up at night, why didn't you tell me this before?'. I had over and over and over, he just didn't listen.

Hi there,

I do have a confirmed blood panel for Celiac's. What I really really want is to have a complete blood work done to find out what Vit/ minerals my body is lacking. Even if the dietician is not all that it is cracked up to be, I will still have a copy of my bloodwork to work with. That will be my key to health. It's stabbing in the dark right now with my diet. Plus, I have been looking into Shelley Case's private practice which is not located too far from me. Unfortunately across a province, but she is close. I think that if I can get access to the resources I need, I can help myself. I need to have a biopsy done to qualify for the both tax write-offs and for my health insurance, then I can really go to bat for me. I will not let anyone stand in my way any longer, trust me, I will get the what I need, now that I know what I need to get. For the first time in my life, I feel like I am in the driver's seat. I will stay there. I have had doctor's not listen to me all my life so I know what I am up against. I have been mocked and laughed at and ignored by the so-called caring physicians. I am working very closely with the Celiac foundation in Canada and trying to use whatever resources that I can find to assist me. I appreciate all the comments as the more I read in here, the more I can understand me.

[ravenwoodglass]

Hi there,

For the first time in my life, I feel like I am in the driver's seat. I will stay there. I have had doctor's not listen to me all my life so I know what I am up against. I have been mocked and laughed at and ignored by the so-called caring physicians. I am working very closely with the Celiac foundation in Canada and trying to use whatever resources that I can find to assist me. I appreciate all the comments as the more I read in here, the more I can understand me.

Hopefully you will be able to get the referral with no problems. They can be helpful with nutrient and calorie issues but many don't know a lot about gluten. It sounds like you have a good plan and I hope the biopsy shows conclusively that you are celiac. It seems funny to say you want someones test to be positive but with the positive blood work and all you already, it seems, have the answer. Write 'at least 6 samples on your forehead before the procedure' just in case.

Your certainly not alone with the doctor issues but hopefully soon you will be feeling well enough so you rarely have to see them.