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Newbie Here - Dr. Thinks It Is Celiac Disease
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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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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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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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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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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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