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Guest Chrisbee

Daughter Has Tests Tomorrow

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Guest Chrisbee

My 21 yo daughter is going in tomorrow morning for an endoscopy and colonoscopy. She tested negative on the blood tests, but her doctor still feels she may have celiac disease. She has a rash on both legs, and she suggested that they biopsy the rash for DH, but the doctor brushed her off and sent her to a GI specialist. Hopefully they will be able to tell something tomorrow, but I am aggravated that she couldn't have had the rash biopsied instead of having to go through the endoscopy and colonoscopy.

My father goes to this same GI specialist. He (my father) has had GI problems all his life and finally developed a rare cancer of the appendix which burst and then cancer seeded all through his abdomen. He's never been diagnosed with celiac, but he sure has the symptoms. It makes you wonder whether or not it could be related.

My 6yo goes to a different specialist June 20, but I'm not sure it will do any good because we've been gluten-free since the beginning of March. Our family practioner suggested we go gluten-free to see if our symptoms improved (pain in joints, rashes, GI issues) and they did improve so drastically that we haven't gone back to eating gluten. Now I find out that testing will be useless. I'm thinking of going the enterolab route for myself and my 6yo and possibly my 10yo. He had no symptoms except ADD and grouchiness. He went gluten-free with us for a couple of months, decided that he didn't have a problem with gluten and ate a big soft pretzel and a hot dog with bun and ended up sick for a few days with diarrhea and stomach pain. He's decided now that maybe he does have a problem. ;)

I told my daughter that she is our guinea pig because we can't be tested now. To be honest, I hope she does have celiac because we can manage that. The poor girl has been miserable since 2nd grade. She's been diagnosed/misdiagnosed with juvenile rhuematioid arthritis, mono, excema, alopecia areata, polymyalgia, and IBS. We've had her to all kinds of specialists and no one ever tested her for celiac until now.

I'll post when we get her test results.

Christi

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Christi,

Certainly sounds like celiac for your whole family. I will be waiting for you to post the results. Is she going to go gluten free irregardless of the results?


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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Hi,

Good luck to you and the kids. Sorry to hear you are having so many problems getting diagnosed, but the same thing happened to the rest of us. Like that helps with the frustration any :P

As for your 20 yr old daughter, she is still eating gluten, you may want to go out for a good pizza and beer tonight. Figure that very likely tonight is her last gluten containing meal - make it a good one with tons of gluten. My last meal was pizza - never liked beer!

If she starts getting really nervous etc at the dr office tomorrow, you can ask for them to put her out quickly that always helps me. The procedure itself is not so terrible, just uncomfortable. Make sure you ask how many biopsies the dr will be taking - you want a few from each area. More chances of catching the damage. BTW: I was negative blood work, sick for over ten years with "a weak stomach" and unexplained weight loss and weight gain, but the biopsy was "text book celiacs!". So go figure.

Best of luck tomorrow and post the results

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Chrisbee:

Make sure that the doctor takes multiple biopsies in multiple locations.

Also, wait for the results of the biopsies. Many doctors say "it doesn't look like celiac" and then the results come back...and sure enough, its Celiac.

Best of luck!

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Guest Chrisbee

Thanks for the replies. I just called my daughter and she said the GI specialist told her he was going to take multiple biopsies in several different areas, so that's good to know. I asked her if she was going to go on the gluten-free diet no matter what the results and she said that she would, at least for a while to see if it helped. I have a feeling she'll stay on it if it helps. I thought it would be hard for me and the other two kids to stay on it, but feeling so much better is a pretty good motivater.

Christi

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Guest Chrisbee

I took my daughter for her biopsy this morning and when it was over, the specialist came in to talk to me. He told me everything looked normal and that he figured it would just turn out to be IBS. He said he wouldn't know for sure until the biopsies come back in 4-5 days. I really figured with all the symptoms she's had for so long, that he would take one look and know it was celiac....or whatever the problem is.

I guess I'll just have to be patient and see what the results are. Hopefully he'll be able to tell us something that makes sense. Are there any other conditions or diseases that would affect many members of a family that has symptoms like celiac? Being gluten free has made such a huge improvement in my health, especially my skin, and my 6yo is able to sleep through a night without waking up in pain for the first time in years. I just can't imagine that it's anything but celiac.

As for the diet, she's going to use up the groceries she has now before going gluten-free, so she'll get that last beer and pizza, lol!

Christi

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She and the rest of you could still have gluten intolerance without villi damage. That would still necessitate being gluten free.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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The doctor can't tell just by looking--the villi damage is microscopic.

Sometimes (as with me) the doctor will see changes that he feels are consistant with Celiac, but the answer will lie with the biopsy.

Best of luck to her :)


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Guest Chrisbee
The doctor can't tell just by looking--the villi damage is microscopic.

Sometimes (as with me) the doctor will see changes that he feels are consistant with Celiac, but the answer will lie with the biopsy.

Best of luck to her :)

I feel so guilty for saying it, but I really hope that it comes back positive for celiac because that way we would know for sure what we're dealing with and how to treat it. Four years ago, she had a terrible flare-up with swollen joints, diarrhea, rash, fatigue and really painful stomach cramps. It was the worst episode she's had, but not the only. She missed most of her junior year of high school because she was so exhausted and it hurt to get out of bed. The rheumatologist I took her to wanted to start her on chemo to send her JRA into remission. Before we could get it set up, she went into remission on her own. I hate to think of what shape she would be in now if I would have allowed them to go ahead with chemo. I thought that was only for cancer and had no idea they used it to treat JRA. In the end, they decided it wasn't JRA, but "non-specific polymylgia" because it went away on it's own with no apparent permanent damage. She's been through so much...that's only one instance out of many, I'm just ready for her to feel better and to know what's caused her to feel bad for so long. The poor girl is trying so hard to hold down a job and go to nursing school and she just is worn out all the time. She deserves a break.

She had projectile vomiting when she was a baby, and by two, she had blisters on her hands and feet. By 5, she had bald spots the size of quarters. She also had a swollen look to her body, her face and her tummy. By 2nd grade, she was so sick she couldn't go to school. They thought she had mono and told me to keep her home. She went back to 3rd grade, but she never quite felt good after the mono, if that's what it was. By 5th grade, she had lost about 15 pounds, had constant stomach pain and was eventually diagnosed with ulcers, but when she didn't get better, she was diagnosed with a kidney infection. Finally, for some reason, they did a chest x-ray and determined she had pneumonia from the spots on her lungs. She was hospitalized and given IV antibiotics. After that, she was so thin, and she never gained that weight back. They thought she had a relapse of pneumonia and that time they said it was viral and she just would have to rest. Later they decided it was scar tissue in the lungs and diagnosed her with asthma. She started to develop swollen joints and was so tired she couldn't do anything. That's when we started going to rheumatologists. She's been to St. Louis Children's Hospital, Shriner's Hospital, and Carle Clinic. I just can't believe all the crap she's been through. I wish one doctor would take the time to really figure out what's wrong with her. I went through many of the same types of experiences with doctors, but just gave up after a while...especially after being handed Prozac prescription more than once.

After seeing my 6yo starting to develop the same types of symptoms, I decided it was time to try to find out what was going on once and for all. I just hope we're on the right track. It sure seems like we are. I'm so sorry if this sounds long and rambling...I'm just so frustrated.

Thanks for listening! :unsure:

Christi

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Guest Chrisbee
She and the rest of you could still have gluten intolerance without villi damage. That would still necessitate being gluten free.

Is there a test that can determine that? I know about Enterolab, and we are seriously thinking about testing the boys that way, but can a doctor do a test? My daughter was told that her blood tests were negative, but she never got the actual numbers.

Thanks,

Christi

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Doctors don't test for gluten intolerance, aside from having IgG intolerance testing done (ELISA). Most doctors don't do that and don't believe in it.

I would highly recommend a holistic/naturopath doctor or a good LLMD (lyme literate medical doctor) to run a gamut of tests if the biopsy comes back negative. It very well could be celiac and/or it could be other things contributing. She may very well need to stay off gluten irregardless. A good LLMD will test for many, many things, not just lyme.

If you feel up to it and would like some advice and brainstorming if the biospy comes back negative you could always join us over on the OMG thread. Just jump in. :D

Is you daughter willing to go gluten free? I forget. :unsure: Sounds like she has been through the gamut of illnesses at least a few times in her life.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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