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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

3.5 Year Sore Throat – At My Wits End...any Ideas?
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3 posts in this topic

Hi Everyone,

First off, this is my first post on this site. I apologize that this may get a bit long, but I'm really hoping someone on here can help me and if you make the committment to read all of this I thank you dearly and appreciate it more than you know! I also apologize if I'm rehashing something I should be able to find somewhere else on the forum, but I'm really at a loss right now.

A little about my current situation: I'm a 22 year old guy, 160 pounds, in pretty good shape, and have played sports/eaten fairly healthy my whole life. I've been fighting this for over 3.5 years and am simply out of ideas. I've seen every doctor I can think of, and no one seems to be able to find anything wrong with me. However, my symptoms are so severe I can barely make it through the day anymore. I'm worn out, exhausted, and ready to give up. I've been prescribed 30 mg Adderall and 200 mg Tramadol per day (for 3 months now), and I still feel like I'm just making it through. I'm sick of drugging myself up every day just to get by, but I don't have a choice at the moment.

I'd like to list my symptoms and see if anyone else has had the same experience. I'm wondering if this is some sort of gluten intolerance/food allergy. Or, if anyone has any other ideas I am more than willing to listen! Here we go...

1. Sore throat – This is the main one. I've had it since August 2009. I've always gotten sore throats since 6th grade, usually for a month at a time, once or twice a year. I got this one in August '09, and it just has never gone away. It's a constant pain, every day. I feel it when I'm not talking, but mostly it makes me want to not speak. Every syllable hurts. Which is really annoying since I used to be super outgoing and make friends with complete strangers all the time.

2. Fatigue – This has gotten bad the last year. If I don't take the Adderall, I lay in bed all day. I usually try to take the weekends off my meds, and I hardly leave my bed. I have no motivation to do anything. It doesn't matter if I sleep 4 hours or 12, I'm exhausted. I'll sleep 12 hours, wake up for 2, then go back to bed for a 2 hour nap. It's insanity!

3. Running out of breath easily – I'm not sure if this ties into the fatigue, but it has started the past year. It's strange because I'm in fairly good shape (I was doing triathlons a little over a year ago), and now I start breathing heavily from going up one flight of stairs. (I did have a procedure done 2 weeks ago where they cleaned out phlegm from the tube that runs into my right lung, this has helped greatly, but I still have some trouble)

4. Lactose Intolerance – This is the one that cued me in to the idea of gluten sensitivity. At one point in high school I used to drink 1/2 gallon of milk/day, and then probably about 2 years ago I developed an intolerance and have been avoiding dairy ever since.

5. Excessive Appetite – I've always had a fast metabolism, but lately it has gotten insane. I eat literally every 2 hours. If I don't eat in 3, I start feeling exhausted and painfully hungry...If I wait 4, I will fall asleep. I recently had a glucose tolerance test (to test for diabetes) and I wasn't able to eat for about 5 hours, and I almost passed out driving back to work afterwords. My blood sugar was extremely low, which I found out later, 54 mg/dL, when I left the hospital. Anyways, it's gotten to the point where I don't enjoy food most of the time. It's a burden. I feel like I have to eat...it's become work.

6. Back Pain – I've had this for a while, but it has gotten really bad the last year. Somedays my throat pain dominates my mental state, some days my back pain does.

7. Acid Reflux – I've had to drastically change my diet to avoid some of my favorite things (orange juice, etc.). I tried omeprazole (prilosec) for a while, but it didn't seem to help. I've also tried holistic ways of dealing with it (aloe vera juice, probiotics), but to no avail. If I stick to a good diet though this doesn't bother me that much anymore. I avoid coffee, tea, and energy drinks.

8. Difficulty Swallowing – This started about 4 months ago, and is part of what has prompted me to really try to tackle this stuff. It feels like my throat is closing up on me and as if I'm forcing food down a narrow hole as I swallow, even though the doc says my throat is plenty open. It doesn't feel like it. Sometimes I'll choke on my multivitamin in the morning. I also choked on shredded chicken in my chicken noodle soup (gluten free) the other day.

I appreciate anyone who has read this far! Just a little more I want to share on the testing I have had done. My glucose tolerance test was negative for diabetes. I had a celiac blood panel done, and I don't have the exact numbers in front of me but it was negative. I've been on a gluten free diet for the last 2 months and haven't seen any improvement, although I have noticed I was glutened 3 times after rechecking labels later. I'm trying my best, but I'm still learning. My younger sister (21) and brother (18) have both been DNA test for celiac and were found to have DQ2.5/DQ8 and DQ2.2/DQ8 genes. I had an upper GI endoscopy recently and the doc stretched open my throat and also ruled out eosinophilic esophagitis. He didn't check for celiac though, and I hadn't considered/thought of it until literally the next day! I had a sleep study 3 weeks ago and ruled out sleep apnea/other sleep disorders. I've been to 3 different ENTs and had multiple scopes, but all they've been able to give me has been omeprazole and blank stares. I've been tested twice for mono and had a CT scan of my neck that found nothing. I had an allergy test 3 years ago when this first started, which found I was mildly allergic to milk and beef, but the doc said it wasn't really significant (can food allergies change drastically over time? maybe something would be more apparent now that this is more progressed?). Could it be a mineral/vitamin deficiency? I also tried a course of prednisone 3 weeks ago, but I developed a rash on the second day and stopped taking them. I might retry that though when I see my doc next week. I also want to try a 24 hour PH monitor. I've also elevated the upper end of my bed for the past year or so, to no avail. Sorry this is so long, and also sorry if it's a bit jumbled. But, anyone have any thoughts? Thank you for listening. Much love.

Merpaul

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HI Merpaul,

Welcome to the forum! the first thing I thought of when you described your throat being sore was Hashimoto's thyroiditis. Hashji's Thyroiditis is an auto-immune disease that attacks the thyroid. It can cause sore throat and eventually can lead to destruction of the thyroid and hypo-thyroid symptoms. Sometimes it cause swelling on the side of the throat. The doctor can test you for TPO antibodies to see if you have Hashimoto's. Hashimoto's is associated with celiac disease, which is also auto-immune. Hashimoto's can cause difficulty swallowing in a couple ways. One is from swelling of the thyroid gland in your throat. Another cause would be low levels of thyroid hormone which is needed to regulate bodily functions.

Eisonophilic Esophagtis is another possibility. It causes a reaction in the throat and can make it hard to swallow.

Another possibility is low B-vitamin levels from malabsorbtion due to damaged villi in the gut. People with celiac often have malabsorbtion even though they eat a healthy diet. The gut has a lining of finger-like projections that help absorb nutrients. When they are damaged by celiac disease the don't absorb correctly. That's a good reason to have your doctor check your vitamin and mineral levels.

I have had problems with swallowing food myself but am doing much better now. I used to always wash food down with a drink of water or it would get stuck about half way down.

Anyway, stick around and keep ask questions. There are several people here with Hashimoto's.

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Merpaul....I just saw this post after answering your other one and thought I'd throw in a few ideas after reading this. I am sorry you are so sick but I understand as I've been there, done that and it isn't pretty, I know.

Your siblings have Celiac genes.....the main ones so there is a very high chance you carry at least one of these also. Celiac would explain many of your symptoms, especially the ridiculous fatigue. But so would Hashi's thyroid disease, which has been mentioned to you above. I have Hashi's and Celiac, along with a few other AI diseases. I have to cut my food up small to eat because on top of Hashi's I have Sjogren's Syndrome, which creates extremely dry eyes and throat. Between the two, I have trouble swallowing and feel like my throat is small. You either might have these or additional food allergies, causing anaphlaxsis to some degree, which will make your throat feel like it is closing up. These are the things your doctors should be looking into.

I would suggest a FULL Celiac panel, a FULL thyroid panel and have that gene testing done yourself. When you feel like you are falling apart and have multiple, seemingly unconnected symptoms, look for Celiac Disease. When you get this sick, it will take longer than 2 months on a gluten-free diet to feel better. If your thyroid is tanking also, you won't feel better on the gluten-free diet until you get your thyroid under control. Hang in there and ask for these tests....no, demand these tests. Celiac can also mess with blood sugar stability. That's what happened to me and I passed out twice before I was diagnosed. I wasn't diabetic either. All of these issues have disappeared for me after going gluten free for awhile. But I got plenty of blank stares also from the AMA!

Oh yeah....you have to be consuming gluten for testing and if they ran your testing before while you were gluten-free, then the testing is no good. A negative blood test does not rule out Celiac, either. Some people never pop positive on the test and they have full blown Celiac Disease.

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