roxieb73

So I haven't been on here in a while. I just wanted to check in and let everyone know how I was doing since going Gluten Free. Let me see diagnoised offically by GI doc last aug! I have Celiac but have been Gluten free for About 3 months......

I have lost 50lbs!!!!!
My blood pressure is NORMAL without meds!!!!
My Cholesterol is back in the NORMAL range without meds!!!!
My vitamin D level is NORMAL!!!
My liver labs are almost back in the normal range...... They have come way down from hundreds to 31 and 44!!!!
All lab work looks GREAT!!
My back no longer hurts
I have my strength back and have been released from PT

I HAVE BEEN GIVEN MY LIFE BACK!!!!!!!!!!

It is so amazing.... I am so greatful I can live again.

Roxie

Your doctor is splitting hairs.  You can be celiac with DQ1 and some experts argue that gluten-sensitive lichen planus is a skin manifestation of celiac.  If rash goes away off gluten I'd consider myself celiac.

Thank you Skylark! I guess I am just a little scared to say offically that I have celiac. I am Gluten free almost 2 weeks now and already starting to feel better. My sister in law was amazed yesterday at how much better I am in such a short period of time. She is a nurse. I do have doctor approval to do Gluten free diet and he put me on a ton of vitamins. I guess he is just going by the book. He obviously sees that Gluten is the problem or he wouldn't do all the testing and tell me to go gluten free. I don't need the offial diagnosis as long as I get better I am happy.

YAY Roxie! Onward & upward from here on out.
Wow, you sure are feeling chipper aren't you? Your endo was today wasn't it? And you're already home & feeling like being on the computer! Good for you.
Now, don't go hog wild on gluten-free processed foods yet. Try to stick to whole foods as much as possible for about 3 months.
To take to work? How about a cold chicken leg, an apple & a hard boiled egg? The rest of the chicken was dinner the night before.

My endoscopy was yesterday. I wasn't on at all yesterday. lol I have been googling gluten free receipies today. lol Tonight is steak, veggies and roasted garlic potatos.

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!

My doctor (BIDMC Boston - Celiac Center)  said 4-6 MONTHS.  I gave up after 3 months and did NOT have a positive result.  (original blood test was positive, went gluten-free for just two weeks, subsequent blood test was negative, additional blood test after 3 month negative as well.)   I've been "technically" diagnosed with gluten intolerance since all my symptoms go away when gluten free and return within days of eating gluten.  My 7 year old son has celiac (diagnosed by biopsy) so it is not a stretch to think that I have it as well.

Other people have antibodies show up right away.  It is different for everyone.  I thought about trying to go longer, but it just wasn't worth it to me.  I don't really care if my doctor thinks I am intolerant or if I actually have celiac - diet is the same.

My son's blood was still  testing positive (very high) 6 months after being gluten free.  His numbers didn't go down until 1 year gluten free.

Cara

Ahhh that is right it was you that said it. lol I just couldn't remember it right. 3 months was how long you lasted not the recommended amount of time. Ughh I sure hope that is not the case with me. I really need this diagnosis I know it would help at least 4 memebers of my family and maybe more. They won't get tested or even listen unless I test positive.