Biopsy Confirmed Celiac Waiting On Blood Work-Overwhelmed

[TanyaC]

After suffering for 10 years of being anemic (sp?) I think they have finally figured out I have Celiac disease. Biopsy during colonoscopy (sp) confirmed. Had blood work done last week go back for follow up on blood work in a couple of weeks. I stopped eating gluten as soon as my blood was drawn and have already noticed improvement in my stomach after just a few days. My daughter had even more symptoms of Celiac disease and as soon as I told her what the doctors told me she went off gluten and has had great results. I called my Mom and asked her if she had ever been tested for Celiac and she said no. When I explained what it was she said "well I am not supposed to eat bread, it gives me a bad stomach ache". And my sister also has problems. So even though I am "waiting" on the blood work I have no doubts. The biopsy showed damage to the villa (sp?) and the small intestine shortening which my gi said are all signs of Celiac. So.... sorry for the run on. I have a couple questions that I am hoping someone might be able to answer. After they did my "upper and lower" gi but before I got the results back I ate some graham crackers. They felt like they got stuck in my throat. I thought that my throat might be sore from the scope. After a few hours it seemed to go away. Then a few days later I was eating some of that chex mix and it happened again. Then again when I was eating a burger on a bun. I went back to dr and he could not explain it. He thought I might have scratched my throat when I ate the graham cracker when it first happened. My question is has anyone ever had a reaction like that with their throat? I was thinking it might me a reaction to the gluten.

Another question is has anyone ever had burning red eyes as a result of eating gluten?

Thanks all for any help. This is going to be a long journey but I am SO ready to start feeling human again.

Have a great evening all.

Thanks!!

Tanya

[mushroom]

It is possible that your throat was a little inflamed from the endoscopy although this does not normally happen. Wait a day or two and drink fluids with your fibrous foods and see if it goes away. I occasionally have problems with swallowing things, out of the blue, and they do go away and I have no idea what causes it.

Welcome to the forum - this is a somewhat long journey on which you have embarked, but it is so worthwhile to feel better that it overrides the inconveniences that it causes (and there will be times when you will curse not being able to eat gluten - everyone does!) It is a new way of life, living, eating, socializing and it takes a bit of getting used to, but we are here to help you over the rough spots. Fire away with any questions that come up and there will be someone here to answer them for you. Good luck on your gluten free journey, and here's to health and feeling better.

[rosetapper23]

Tanya,

Your journey is similar to mine. I figured out first that I probably had celiac disease, and I had my son tested because he had the same symptoms. He tested positive for celiac, and then I called my mom because she also had the same symptoms. She refused to believe she had celiac because she didn't want to give up eating bread. However, after a year, she had a test that showed her bones were 70% decalcified...and then she called me to confess that she did, indeed, have many symptoms of celiac. All three of us have been gluten free for eight years, and we DO feel human again--and so will you very shortly.

As for the throat thing, my muscles are all very rigid (due to celiac, I believe), and my esophagus was very sore for a long time after I had the endoscopy--I attribute it to the fact that it probably didn't want to stretch enough for the tube. It took nearly six months before my throat stopped hurting and having difficulties swallowing. Of course, you'll probably recover sooner than that. I'm so glad that you now know what has been bedeviling you--best of luck to you!

[Lisa Kaye]

I've recently been to the Celiac Center at Jefferson Univ Hospital in Philly and the specialist

said some celiacs have difficulty with swallowing. In fact, my cousin's only symptom was difficulty with

swallowing --which lead her to a GI doc to investigate and ultimately she was diagnosed with Celiac.

[TanyaC]

I've recently been to the Celiac Center at Jefferson Univ Hospital in Philly and the specialist

said some celiacs have difficulty with swallowing. In fact, my cousin's only symptom was difficulty with

swallowing --which lead her to a GI doc to investigate and ultimately she was diagnosed with Celiac.

Thanks guys for the responses. I feel so much better hearing that the issues after the procedures may be related to Celiac. Its very frightening when you are eating and you feel like your food is getting stuck in your throat.

Is there any books that you would recommend me purchasing that will assist me in determining which foods I can and can't eat.

Thanks again!!!

Tanya

[rosetapper23]

I can recommend, "Celiac Disease: The Hidden Epidemic," by Dr. Peter Green. He speaks in laymen's terms, and his book contains a lengthy list of what you cannot eat. Remember--natural foods at first are best because you need the good nutrition to help you recover your health....so that means meats, eggs, dairy, nuts, vegetables, and fruits are all just fine to eat. Try to avoid processed foods at first (even the gluten-free kind), but eventually you might try them to see if they agree with you.

[AVR1962]

I would guess that you probably did scratch your throat with the graham crackers. However, if it persists ask to have your thyroid checked. If the thyroid is enlarged or if you have a growth called a nodule on the thryoid it can make swollowing harder. I have a nodule that I am on meds for to shrink. Most people will have them before the age of 50 and never know because normally they cause no issues.

[T.H.]

Welcome to the club, Tanya!

Lots of people here who are going to right there with you - years undiagnosed, and when that first diagnosis comes in, everybody in the family starts realizing it's a problem for them, too.

For recommendations:

1. For recipes, I've had much better luck on the web than I did with books. There are some awesome gluten-free bloggers out there with some great stuff. Gluten Free girl is one, the gluten free goddess is another that pops into mind. 101cookbooks.com is one with gluten free foods, although it's not all gluten-free.

2. For information, the forums have actually ended up the most useful for me. This disease is only partially researched and understood yet, so there are a lot of issues celiacs are running into that doctors aren't aware of, or don't have any facts on yet. I don't think I would have healed at all if not for some of the lovely people on forums like this. There are some good, definitive books, but I think they're already being mentioned. :-)

3. If you look up gluten free grocery shopping guide on google, it should pop up with links to one or two books that are updated yearly, with regular products that are gluten-free. Really, really useful when you're starting off and trying to figure it all out.

good luck, and congratulations on finding out a way to get healthy again. Seriously? It's stunning how much of a difference it makes.

[Takala]

Dry eyes can be a result of Sjogren's. This is another associated auto immune condition which makes your eyes have trouble making tears, and your mouth gets dry from less saliva, it can also effect how you can sweat and cool yourself in hot weather. Also, your mucous will be stickier and you may have trouble clearing a cough during a chest cold (if this describes you, make sure you let doctors know about it so they can get with the program- you won't necessarily get over a cold the way you should, and will need help so you don't end up with bad bronchitis) When the eyes are dry they are more vulnerable to other irritations. You also might find yourself very sensitive to bright glarey light. You may have to alter your makeup brands if you wear any.... It should ease up somewhat on the gluten free diet, but you might end up getting friendly with eye drops in challenging situations. And sunglasses.

If it does not resolve soon see a doctor, as a simple infection can easily be cleared up with antibiotic eye drops. Don't ignore it, as you may be just not be able to make enough tears to clear it up yourself.

[Gemini]

Dry eyes can be a result of Sjogren's. This is another associated auto immune condition which makes your eyes have trouble making tears, and your mouth gets dry from less saliva, it can also effect how you can sweat and cool yourself in hot weather. Also, your mucous will be stickier and you may have trouble clearing a cough during a chest cold (if this describes you, make sure you let doctors know about it so they can get with the program- you won't necessarily get over a cold the way you should, and will need help so you don't end up with bad bronchitis) When the eyes are dry they are more vulnerable to other irritations. You also might find yourself very sensitive to bright glarey light. You may have to alter your makeup brands if you wear any.... It should ease up somewhat on the gluten free diet, but you might end up getting friendly with eye drops in challenging situations. And sunglasses.

If it does not resolve soon see a doctor, as a simple infection can easily be cleared up with antibiotic eye drops. Don't ignore it, as you may be just not be able to make enough tears to clear it up yourself.

Takala...do you have Sjogren's? I do and your post was spot on! The first thing I thought when I read the original posters message was Sjogren's. As far as catching colds and healing slower, that can happen but since I started the gluten-free diet, I haven't had a cold or gotten sick so I've been lucky.