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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

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Hi all :) This is my first post after using this site countless times for research. On one of my visits to celiac.com someone suggested writing down everything to give to your doctor at an appointment, so that you don't forget important info. I have a GI doctor's appointment next week, and the following is what I was going to give him. Please share your thoughts, whether I sound like I indeed have celiac or gluten intolerance, and if I should add or take out anything. There are so many factors, but my biggest complaint is the constant bloating and constipation. Be warned...I put everything out there in this letter :lol: It is lengthy, but I appreciate any feedback you can give :rolleyes:

Primary Concern: Do I have celiac or gluten intolerance?

Background: Lost fifty pounds in six months in 2010 through healthy diet and exercise change. During this lifestyle change, I began eating a lot more whole grain and whole-wheat products than ever before. During December 2010, I suffered a severe sinus and ear infection. Since the infection, my body has not been cooperating.

Symptoms:

Main Symptom: Constantly dealing with extreme bloating, gas and constipation, which were not a problem before the infection. Even if I am able to go, I often feel as though my bowels aren’t completely empty.

-I eat plenty of fiber and drink between 60-100 oz. of water everyday. The standard line of “increase your fiber and drink more water” brings me no relief, and actually creates more intestinal distress with increased gas.

-I have tried every laxative in the hopes to keep me regular. My GP recommended Miralax to me as safe for long-term use. Miralax is ineffective for me and creates even more bloating and gas with no relief. I have to take 5 Dulcolax to get minimal relief, and in the past I have drunk a whole bottle of magnesium citrate hoping for relief and nothing happened. A whole bottle and nothing! The only thing that seems to give me any kind of relief are high doses of highly absorbable magnesium supplements. I eat plenty of magnesium rich foods (almonds, avocados, bananas), so I am wondering why my body is so lacking in magnesium? (After researching, I discovered celiac and gluten intolerance can lead to the malabsorption of magnesium.)

Other Symptoms: Recurring angular cheilitis (contact dermatitis), which was finally determined to be caused from my silver French horn mouthpiece. When asking my GP why I only developed contact dermatitis on my lips, he said it was from the moisture while performing. However, now I also have developed an allergy to other silver items such as jewelry, which creates a rash and redness on my skin. I had played for years on a silver mouthpiece with no problem. Since my bouts with angular cheilitis, I have switched to a gold plated mouthpiece with no problems.

-Can sleep for 8 hours and still wake-up feeling completely exhausted

-Have suffered from bouts of extreme joint pain (right hip especially), rib pain, back pain, headaches

-Heartburn

-My iron level when giving blood was 13.0

-Eye and toe twitching

-I was diagnosed with depression by my GP in October 2011 and took Wellbutrin until February 2012.

-In March 2012, I developed a severe allergy to a cavity filling material that had been used on my teeth before. My dentist said that although it’s very rare, people can have allergies to materials, but he found it very strange that I had developed one to a product he had used before. He replaced the filling with another company’s product and it has been doing much better, but I notice the gums are still somewhat swollen, but when I’ve experimented giving up gluten, the swelling and inflammation go away.

-Stomach and intestinal gurgling/popping

-I have extremely dry chapped hands that bleed if I don’t constantly reapply lotion in the winter

-If I eat a lot of gluten I can “gain” 5 pounds overnight

-Absent or inconsistent menstrual cycles. *See additional information

*Additional information: I began taking Yaz in October 2009 was switched to the generic Gianvi in January 2011 and then back to Yaz in July 2011, and discontinued its use in December of 2011. This was the second time I have stopped taking a BC pill and the first time my period came back with no problem. When I ended Yaz in December 2011, I went 5 months without a period. My OB/GYN requested blood tests, which I have attached, and everything came back normal with the exception of very low estrogen, which research says can be affected by gluten intolerance. I took 20mg of Provera and finally had my first period in May 2012! In has been somewhat sporadic since May, and I completely skipped my period in October.

For me, constipation takes a huge hit on my energy level, and when I am constipated and bloated, I don’t exercise as frequently, which is why I have gained some weight back. Also when dealing with my depression, I also enjoyed a fair amount of sweets which temporarily elevated my mood, but it wasn’t until my gluten-free experimentation that I discovered my bloating, mood, joint pain, twitching, chapped hands, exhaustion, etc. all improved. After talking with a friend who has been diagnosed with gluten intolerance, he suggested I make an appointment with a GI specialist. All this time I was under the assumption that all celiacs and gluten intolerant people are thin with diarrhea, but now I’ve come to realize through my research that many are constipated and overweight. Also through research, I’ve learned that for many, an infection causes their celiac and gluten intolerance to surface.

I’m tired of trying products and medicines in the hopes they give me some normalcy. When I lost the weight before getting my infection, it was the best I’ve ever felt, and I want to return to having that great sense of wellbeing!

Test requested: Pill Cam endoscopy

*Forum Members: Any feedback is much appreciated :)

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Have you had any doctor run a celiac blood panel set of tests yet, as the GI doc will not do the endoscopy without that. And the doctor may not do "pill cam" but the other kind of searching with a flexible tube, light, and camera.

Secondly, on a tangent, the artificial hormones in the progestins in birth control pills can make women seriously depressed. Just a FYI. And these ob-gyns will never admit to it, just keep switching you around again and again to different brands. Natural progesterone does not do this.

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Hi all :) This is my first post after using this site countless times for research. On one of my visits to celiac.com someone suggested writing down everything to give to your doctor at an appointment, so that you don't forget important info. I have a GI doctor's appointment next week, and the following is what I was going to give him. Please share your thoughts, whether I sound like I indeed have celiac or gluten intolerance, and if I should add or take out anything. There are so many factors, but my biggest complaint is the constant bloating and constipation. Be warned...I put everything out there in this letter :lol: It is lengthy, but I appreciate any feedback you can give :rolleyes:

Primary Concern: Do I have celiac or gluten intolerance?

Background: Lost fifty pounds in six months in 2010 through healthy diet and exercise change. During this lifestyle change, I began eating a lot more whole grain and whole-wheat products than ever before. During December 2010, I suffered a severe sinus and ear infection. Since the infection, my body has not been cooperating.

Symptoms:

Main Symptom: Constantly dealing with extreme bloating, gas and constipation, which were not a problem before the infection. Even if I am able to go, I often feel as though my bowels aren’t completely empty.

-I eat plenty of fiber and drink between 60-100 oz. of water everyday. The standard line of “increase your fiber and drink more water” brings me no relief, and actually creates more intestinal distress with increased gas.

-I have tried every laxative in the hopes to keep me regular. My GP recommended Miralax to me as safe for long-term use. Miralax is ineffective for me and creates even more bloating and gas with no relief. I have to take 5 Dulcolax to get minimal relief, and in the past I have drunk a whole bottle of magnesium citrate hoping for relief and nothing happened. A whole bottle and nothing! The only thing that seems to give me any kind of relief are high doses of highly absorbable magnesium supplements. I eat plenty of magnesium rich foods (almonds, avocados, bananas), so I am wondering why my body is so lacking in magnesium? (After researching, I discovered celiac and gluten intolerance can lead to the malabsorption of magnesium.)

Other Symptoms: Recurring angular cheilitis (contact dermatitis), which was finally determined to be caused from my silver French horn mouthpiece. When asking my GP why I only developed contact dermatitis on my lips, he said it was from the moisture while performing. However, now I also have developed an allergy to other silver items such as jewelry, which creates a rash and redness on my skin. I had played for years on a silver mouthpiece with no problem. Since my bouts with angular cheilitis, I have switched to a gold plated mouthpiece with no problems.

-Can sleep for 8 hours and still wake-up feeling completely exhausted

-Have suffered from bouts of extreme joint pain (right hip especially), rib pain, back pain, headaches

-Heartburn

-My iron level when giving blood was 13.0

-Eye and toe twitching

-I was diagnosed with depression by my GP in October 2011 and took Wellbutrin until February 2012.

-In March 2012, I developed a severe allergy to a cavity filling material that had been used on my teeth before. My dentist said that although it’s very rare, people can have allergies to materials, but he found it very strange that I had developed one to a product he had used before. He replaced the filling with another company’s product and it has been doing much better, but I notice the gums are still somewhat swollen, but when I’ve experimented giving up gluten, the swelling and inflammation go away.

-Stomach and intestinal gurgling/popping

-I have extremely dry chapped hands that bleed if I don’t constantly reapply lotion in the winter

-If I eat a lot of gluten I can “gain” 5 pounds overnight

-Absent or inconsistent menstrual cycles. *See additional information

*Additional information: I began taking Yaz in October 2009 was switched to the generic Gianvi in January 2011 and then back to Yaz in July 2011, and discontinued its use in December of 2011. This was the second time I have stopped taking a BC pill and the first time my period came back with no problem. When I ended Yaz in December 2011, I went 5 months without a period. My OB/GYN requested blood tests, which I have attached, and everything came back normal with the exception of very low estrogen, which research says can be affected by gluten intolerance. I took 20mg of Provera and finally had my first period in May 2012! In has been somewhat sporadic since May, and I completely skipped my period in October.

For me, constipation takes a huge hit on my energy level, and when I am constipated and bloated, I don’t exercise as frequently, which is why I have gained some weight back. Also when dealing with my depression, I also enjoyed a fair amount of sweets which temporarily elevated my mood, but it wasn’t until my gluten-free experimentation that I discovered my bloating, mood, joint pain, twitching, chapped hands, exhaustion, etc. all improved. After talking with a friend who has been diagnosed with gluten intolerance, he suggested I make an appointment with a GI specialist. All this time I was under the assumption that all celiacs and gluten intolerant people are thin with diarrhea, but now I’ve come to realize through my research that many are constipated and overweight. Also through research, I’ve learned that for many, an infection causes their celiac and gluten intolerance to surface.

I’m tired of trying products and medicines in the hopes they give me some normalcy. When I lost the weight before getting my infection, it was the best I’ve ever felt, and I want to return to having that great sense of wellbeing!

Test requested: Pill Cam endoscopy

*Forum Members: Any feedback is much appreciated :)

To continue on from Takala's advice, if and when you get to see the GI, I can promise you he is not going to read what you wrote :wacko: You had best prepare what you want him to see in bullet form, so that he can scan his eyes over it and pick out the salient points. Remember that his goal is to spend as little time with you as possible, so omit all unnecessary words. I have bolded what I consider to be the salient points. If you put these in to a bullet type document to give to him, then you can verbally expand on them as necessary. I agree that you need to have the blood testing before going to the GI because that will be his first question - what were your test results?

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I agree with the others that short bullets is the way to go.

I would also give brief examples like "bloating in the upper abdomen so belly distends over belt line" or extreme jont pain in my left hip that makes coming down stairs difficult". Examples can help if you have a doctor who listens.

I was going to mention the BC too. That can cause problems in many autoimmune disorders like Hashimoto's (which about 1/10 celiacs have) or lupus. It's not far fetctched that it would affect celiacs badly too.

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    • Apologies for my over-reaction.  As the shampoo exposure was only for a couple week or so, I doubt any lab tests would have indicated exposure. Unfortunately, since I didn't have the antibodies, I can only rely on my symptoms to tell me if I've been exposed. I'm fortunate enough that eliminating gluten (and dairy) from my diet completely fixed my problems. I have had no lingering systems, and now that I have been gluten free for a while, when I do get gluten I have a very clear reaction (and a distinct reaction to dairy) that follows a fairly predictable timeline. This has accidentally been tested a couple of times. For example, early on before I was better at reading labels I grabbed some cookies at the grocery store that I thought were gluten free (the company produces both a normal and gluten-free version, and this was before I learned to avoid shared facilities). I had grabbed the wrong bag but I didn't figure it out until about a week of feeling crappy had passed and I went searching for a culprit. Things like this have happened a couple of times, where I accidentally did a blinded experiment on myself. The symptoms are consistent, and resolve once I remove the offending item. So when I recognized my symptoms as the result of gluten, I went looking for a culprit and I found the shampoo and conditioner. I removed them and then I got better.  My problems are largely systemic. I wouldn't be surprised if I don't actually have celiac but some other immune mediated reaction that hasn't been defined, but calling it celiac is the best way to get people to take my needs seriously (which I'm sure you understand). Unfortunately, my problems don't seem to fit into any particular diagnostic bucket, so I've learned not to rely on the official medical terms and just go with what works. I'm lucky to have had doctors who think the same way, else they might have told me that I didn't need to go gluten free once I failed to show clear-cut celiac. Maybe I'm pre-celiac, maybe it's the much maligned NCGS, or it's all related to leaky gut (I am eagerly awaiting the FDA approval of larazotide so that I can get a doctor to give me some, I think it might do me a lot of good). All I know is that when I went gluten and dairy free it literally changed my life.  In general it seems that gluten exposure causes a generalized inflammatory response. I get some inflammation in my gut that manifests as reflux, acid indigestion (what I call "fake hunger"), and a little bit of urgency and unpredictability with regards to bathroom needs, but if that were the only problem, I think I could live with it. I also get headaches, brain fog, my depression/anxiety gets triggered to a scary degree, arthritis, muscle aches, and then, the clincher, muscles spasms in my upper back and neck that have been known to lay me out for a couple of days while I wait for the muscle relaxants to help me heal. The muscle spasms, arthritis and brain fog are the most recognizable and are usually what cue me in that I got glutened, especially the spasms.  Again, sorry for being oversensitive. I should have known better, since this is such a supportive community.  
    • I appreciate your point. However, constancy of my celiac symptoms indicates that I have had the disease for at least three years - while I have never experienced any food allergies in that time. Although I will keep an eye on any emerging allergies, I believe my current fatigue is due to nutritional deficiency, because the only exogenous change in my life style has been the transition to gluten free diet.   Yes, I certainly need to keep a food diary. Thanks again for the advice.
    • In many cases no.....I consume heavy magnesium foods like pumpkin seeds, cocoa nibs etc....and still need 2-3x the dose of magnesium recommendations. Going on more of what poster boy said. You dose magnesium to tolerance with citrate like Natural Vitality Calm you start off small partial doses and slow ramp up....it can hit you hard causing gas and D if you go to quick into it. You dose citrate to tolerance meaning you slowly up your dose til you get loose stools...then back down a bit. You should have vivid dreams with a good dosing....also if it becomes to harsh or you can not handle citrate there is Doctors Best Glycinate...it does not have the gut effects at all...but the dreams and how much it makes you relax is more more felt.   ...with this disease you can have a food intolerance or allergy crop up out of the blue....like no where. You have a autoimmune disease....celiac it effects your immune system and can make it really wonky. Like it seems to always be on guard like a sleep deprived sentry on stim packs...jumps at everything and shoots it. If you get sick, eat something odd or harsh you system might red flag it as a issue for awhile and go bonkers....keep a food diary and try a food rotation in the mean time...OH as a example to this, I was fine with chia seeds last week...I got a cold over the weekend....same bag, same brand same way....withing 30mins I now puke if I eat them...new intolerance.....I also am finding jalapenos/paprika making it sleepy tired....so I am removing them both for a few months from my diet and changing to other sources for fats/fiber and vitamin A/C til I get over that issue.....these things just happen. https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
    • Hi Isabel, Your body needs nutrients to grow.  Nutrients not absorbed well when we have celiac disease damage in our guts.   But, if you do a good job of avoiding gluten, the gut damage should heal and you will be able to absorb nutrients again. The thing to remember is celiac disease is an immune system reaction.  Immune reactions are very sensitive and just a tiny amount of gluten can get them going.   And they can last for months.  So it;s very important to avoid all gluten all the time, to keep the immune reaction down.  Keeping the immune reaction down keeps the damage down, and the healing can keep up. You may start to grow more if you can absorb nutrients better.  Some extra vitamin pills might be a good idea.  Your doctor should know.  
    • Thank you Gail for your response. Of course one should be mindful of the possibility of food allergies but I don't think that's the case with my current situations. Save for gluten containing product, everything I eat now I used to eat before with no reaction whatsoever. I think my issue is more likely to be deficiency in minerals and such.
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