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Newbie Here - Dr. Thinks It Is Celiac Disease


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3 replies to this topic

#1 Smylinacha

 
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Posted 22 January 2013 - 10:13 AM

Hello - this is a great website - I have been reading up a bunch in here. My problems go back 10 years - I was having digestion issues - constipation and indigestion and went to the gastro. I was dx'd with IBS-C and put on Nexium and back then Zelnorm and after 6 months of being treated I felt better. I was not told to stay away from certain foods but pretty much anything with bread or pasta in it bothered me and now it's all starting again.

A year ago I was dx'd with hypothyroid and am on .075mg Levothyroxine for that. It came back in my bloodwork and I was losing weight and had hairloss. Still had tummy troubles but attributed it to stress and eating poorly. I started again with tummy troubles over the summer - more weight loss, I'd get bloated and gassy & constipated after eating pizza, breads or pastas which I love.

I was sick all through the hoidays as I was eating so much stuff - stuffing, breads, pastas, pizzas, etc. And the days I felt very ill, I just drank water and did not eat - I had no appetite.

3 weeks ago I said enough is enough and I started a food diary. I wrote down everything I ate. There were days where I wanted to cut out the breads and pastas and I did. I can tell you on those days I felt much better. The constipation was so bad I had a chronic low back ache but the days I didn't eat this stuff I felt good.

Also to help with the constipation I am taking Magnesium Oxide and it helps me go - I can go every day now but still feel like I can't "finish".

So today was my gasto appointment. She was glad I kept a food diary. She took my weight and I lost 2 more pounds since Christmas. I can't afford to lose anymore as I am now at 96 lbs at 5 feet tall. She said I have a ton of air in my belly and could hear it and feel it. They want to do a colonoscopy to rule out polyps and I am approaching 50 years old. But she also said she wants to do the blood test for the Celiac but I would have to eat and get sick again. We aren't doing that until after the colonoscopy on 2/15. I don't want to be sick for that. I did stop at the store and I bought Align and I also bought some gluten free ensure drinks to put on some weight. She agrees that I have many symptoms of Celiac and to stay off the gluten and report back weekly how I feel.

Guess I am going to be doing a ton of reading in here about foods and reading lots of labels at the stores. How do I tell if gluten is in makeup? I don't wear much but love my lipsticks.

I look forward to learning a lot in here.

Kim :)
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#2 GottaSki

 
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Posted 22 January 2013 - 10:37 AM

Welcome Kim!!

Your are correct -- reading as much as you can and asking questions is the best way to ease a very tough transition.

Is it possible to add an endoscopy to the colonoscopy? Sometimes doctors don't think of it and it is easier to get both done at the same time -- one sedation is better than two.

Did you have your blood tests?

tTG - both IgA and IgG
EMA
DGP - both IgA and IgG
Total IgA

If not, don't remove gluten quite yet -- removing gluten stops the immune reaction that is tested for in the celiac antibody panels. Once the blood tests are complete it is wise to remain on gluten until endoscopy is complete. When ALL testing is complete - then remove ALL gluten.

Hang in there -- oh the lipstick -- I'd start with emailing the manufacturer of your favorites -- you can wait on other products as you don't eat much eye make-up ;)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#3 GFinDC

 
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Posted 22 January 2013 - 02:12 PM

Welcome Kim! Don't worry too much about being sick for the colonoscopy. They give you a clean out mixture to take the night before that will get everything clean as a whistle by the next day. Lisa is right, the endoscopy is usually used for celiac testing. they take 5 to 8 small biopsy samples for review at a lab. They check them for villi damage. The blood tests should be done also and they can be done anytime before starting the gluten-free diet. No need to wait for the endoscopy for that. You could also ask for a vitamin and mineral levels test. Celiac can cause malabsorption of vitamins and that is another possible indicator of celiac. Plus it's good to know if you are low on certain vitamins so you can work on getting those levels up.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#4 nvsmom

 
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Posted 22 January 2013 - 02:17 PM

Lisa gives great advice. The upper endoscopy is how many celiacs are diagnosed, besides the blood tests she listed. I think a minimum of eight biopsies is recommended for accurate testing. For the blood tests, if you are eating gluten at all, even periodically, I would request getting those labs done this week; the longer you are off gluten, the more likely it is that a false negative result will occur in your lab work, and the harder it will be to get an accurate test. If the gluten is hurting you, try to eat it in the evenings so you can sleep (hopefully) through most of the discomfort.

There are a bunch of gluten-free lipsticks and lip glosses out there. I'm a fan of Bert's Bees... I like the smells.

Also, you might want to make sure your thyroid llevels (free T4 and T3, TSH) are good for you. As you know, when you go hypo it slows your metabolism and digestion and causes some serious constipation. I know thyroid treatment seemed to help my "C".

Best wishes to you, and welcome to the board. :)

Oops, editted to add that I posted at the same time as Paul so I repeated a few of his points.
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