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For Irishheart And My Story...........

roxieb73

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roxieb73 Contributor
roxieb73
Posted

Was reading posts. Bits and pieces of your story. Sounds like you were on death's door step before diagnosis! Ughhh....... Makes me feel almost lucky. Thank you for sharing your story.

I have had symptoms back to birth! I was a Failure to Thrive baby. 12lbs at a year old, I had intusseception right before my first birthday. They told my mom I was going to die. Every time I got off the clear liquids and they tried to feed me I would get soooo sick I wound up in the hospital. Then things seemed to get better as a child I seemed ok but I did struggle with my weight. I started gaining weight at 12 and have been over weight since then. I never had regular periods. When I got pregnant with my son I really started getting sick. I had 9 months of pure hell. Pitting edema at 3 months on bedrest for 6 weeks, preclampsia. After I had him I got septic. Pregnancy seems to be what brought it on full force. My son is almost 8 now. :( I have gone from 170lbs when I got pregnant to over 300lbs. I have massive edema, hypertension, PCOS, headaches all the time, severe reflux, gallstones, elevated liver enzymes, chronic fatigue, I can barely walk from the muscle weakness. It is impossible to be on my feet for even 5 mins. Severe RLS, what I thought was irritable bowel, nightblindness, and recently this awful rash that I believe to be DH after posting pictures here.

I went 2 weeks off gluten for the adkins diet and felt SOOOOOOOOOOO much better!!! I lost all extra fluid, 20lbs, was walking better, no headaches, pain was 40% better and even my GERD and RLS were better. That is when because of symptoms my son had the doctor said the MAGIC word.... CELIAC! I looked it up and the symptoms and it was like OMG THAT IS ME!!!!!!!!!! I feel like FINALLY things make sense and there is a reason for this living hell I am in. Then the antibody tests came back negative! :( My doc asked if I was eating gluten. I told him I did the night before the test and had only been gluten free for 2 weeks. He just lowered his head and shook it. He said he believed we got a false negative and wanted me to start back eating gluten for 4 weeks then we would retest. I am also waiting on results of HLA typing. I am 18 days in and feel like I am dying!!!! Don't know if I can make it another 10 days for antibody tests let alone longer for biopsy! Just wishing I could fast forward a month.

Regardless of test outcomes I am going gluten free because after being here I can't deny even if it is not Celiac I AM gluten intolerant!! If I felt that much better after 2 weeks how will I feel in a month? I can't wait to get to that point!

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IrishHeart Veteran
IrishHeart
Posted

Hon, I feel your pain, I really do.

I am sorry you have to keep eating the poison that makes you feel like you are dying just for a test. You sure sound gluten intolerant to me. IMHO

Why didn't he just order a BIOPSY? If you've got enough damage, it would still be evident after just 2 weeks gluten-free.

Since you're almost there, and a DX is important to you, I guess you have to stick with it.

Symptom resolution would be enough for me to stay off gluten for life. If you were NOT gluten intolerant, nothing would have changed, right?

I could never withstand a gluten challenge, nor would my doctor suggest such a thing.

Hang in there. Test results or not---do what you feels right in your gut (pun intended!)

Best wishes--and keep us posted.

roxieb73 Contributor
roxieb73
Posted
  • Author

Hon, I feel your pain, I really do.

I am sorry you have to keep eating the poison that makes you feel like you are dying just for a test. You sure sound gluten intolerant to me. IMHO

Why didn't he just order a BIOPSY? If you've got enough damage, it would still be evident after just 2 weeks gluten-free.

Since you're almost there, and a DX is important to you, I guess you have to stick with it.

Symptom resolution would be enough for me to stay off gluten for life. If you were NOT gluten intolerant, nothing would have changed, right?

I could never withstand a gluten challenge, nor would my doctor suggest such a thing.

Hang in there. Test results or not---do what you feels right in your gut (pun intended!)

Best wishes--and keep us posted.

You just answered the question I just posted. lol So they will do biopsies without blood work. I am guessing he didn't because he is my GP not my GI doc. So the tests are what he can do. I will have to go elsewhere for the biopsy. ;)

ciamarie Rookie
ciamarie
Posted

Also, which blood test(s) did they do? Apparently there are 4 or so different tests included in the 'full celiac panel'. If you've been reading some of the other threads on here, you probably found that info., but just thought I'd throw out the possibility that they didn't do the full panel. Hang in there, and welcome to the forum!

roxieb73 Contributor
roxieb73
Posted
  • Author

Also, which blood test(s) did they do? Apparently there are 4 or so different tests included in the 'full celiac panel'. If you've been reading some of the other threads on here, you probably found that info., but just thought I'd throw out the possibility that they didn't do the full panel. Hang in there, and welcome to the forum!

I did find that out after. I did not get a full panel the first time but I have a full list of tests to run the second time. ;)

IrishHeart Veteran
IrishHeart
Posted

I did find that out after. I did not get a full panel the first time but I have a full list of tests to run the second time. ;)

That is a VERY good idea, Roxie! ;)

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