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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.

Gluten Free Symptoms?
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14 posts in this topic

Hello all...

I just had a few questions about what happened to you all in your body when you went gluten-free.

I have been on the diet around a month and a half now. I know that most times I feel better, if I could just stop screwing up (but I am getting better at it)! I have started getting heart burn a lot, and it seems to kinda go up into my throat. Acid reflux? And, this happens almost every afternoon, getting worse into evening. Most days I am not eating something that would normally cause this. Some nights it is worse than others, but is almost always there in some form or another. Some times it just feels like mt throat is thick and getting sore. Is this normal? Or, am I maybe mistaking some seasonal allergies as having something to do with being gluten-free?

My arthritis has also gotton worse, and some nights it is nearly impossible to sleep. I have been taking a lot of Ibuprofen just to be able to get to sleep. My husband was concerned a few weeks ago that I had gone into hyperthyroid again, because of how lousy I was sleeping and the energy I had. Although, this week I have been back to naps, and zonking out early.

I also have more headaches. Which I guess could also be allergies. Usually my allergies are in the spring time, though. But, I guess monsoon season could have brought them up. It's just confusing, because I don't know what is going on with my body.

I did find that I am going to stop drinking caffeine. I am down to one cup of coffee in the morning. It is going to be hard to give that one up, but I know that caffeine makes my anxiety worse. I have known this for a long time, but I was reading about it the other day and it actually said that caffeine could do that (which most people don't believe, or don't want to believe).

Anwyay, I finally have my daughter on insurance. I should be on some myself the next few weeks. We will see what my doctor says about me going on the diet, etc. If I have to I will eat gluten again, but I hope that I will get the doctor to listen to me. I would like to have my daughter at least get the blood test for the gluten intolerance. I am highly suspious that she has the same thing, and JRA too. We will see.

Okay, I am done blabbing now. This E-mail was basically just to see if anyone else had any weird things happen when they went gluten-free, and if the symptoms stuck around, or went away? Thanks all for putting up with me!!! :lol:

Deanna

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I've been gluten-free about the same length of time you have, and I have had some interesting side effects from the diet. For one thing I have started losing weight rapidly, and I'm already too thin to be healthy. I think this is because 1) I am eating less now that I have to avoid so many foods and 2) I have more energy than I used to and have been more active. But even though I've lost some weight I still feel much better overall. I have had bloating come and go with all the unusual new foods I've been eating (lots more fresh fruit and vegetables, plus new foods like bean flours for instance) which my system still needs to adjust to. I've also had some strange symptoms which may or may not be related to the new diet, including bone pain and ankle pain, and an increase in bruising (I never used to bruise visibly). I've also started noticing some disrupted sleep patterns, although I already avoid caffeine since it gives me headaches.

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I love your icon! I am gonna work on getting one of my own.

I go back and forth with weight. I will lose around 5 pounds then gain it back. I really thought I would lose a lot, since I used to eat like a pig before going gluten-free. My weight has always been weird. I have stayed at 115 for the last 6 years, except when pregnant of course. I should be over weight because of being hypo-thyroid. But, it doesn't seem that I really gain or lose either way. Maybe it is all linked into the gluten thing, who knows. Thanks for your reply!

Deanna

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Well, since I've been on the gluten-free diet, there has been only one thing--gas--to put it in the most polite terms, not in frequency but in--olfactory registry to others, if anyone gets my drift.

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I've been gluten-free for 4 months now and notice heartburn and disrupted sleep patterns. Also the gas problem is still there but so much less than before! Before it was chronic and uncontrollable. My family cheered when I went gluten-free and the air cleared :). But it does take 6 months to 2 years to really heal at my age, so I'm not complaining. If I accidently ingest gulten, the symptoms I just described come on really, really strong for about a week. :( And so it goes....

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I've been gluten-free for six months now and feel better(somtimes <_< ).

The first 3 months of being gluten-free I had similar symptoms.

really bad heartburn, bone and joint pain(flu like ache), headaches(gone for the most part but now a sure sign I have beed glutenized)

I still get those symptoms but not very often.

The biggest post gluten symptom is I sleep very little. 5 hrs a night and then I'm wide awake-still tierd-but unable to go back to sleep. I use to be king of naps but now I just lay there unable to sleep.

Keeping my weight up is also a bit of a problem.

Not big issues compared to what I was dealing with about a year ago.

Steve

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Hi Deanna, My daughter's reflux is awful after gluten-free 6 mos. with a flaming positive ph probe. She takes 40 mg Neium 2x daily and Pepcid 20 mg 2x daily and weighs in at 103. At this quadruple dose of reflux meds, today the doctor said she could also use tums. No matter what she eats, even ice cream, she has heartburn and buprs like a turck driver. She has not been dx'd with arthritis but has connective tissue disease, ehlers danlos, and the rheumatologist put her on Vioxx for joint pain. She cannot have any ibuprofin because of the reflux and the Vioxx is much easier on the digestive system. You need to cut out these meds as they will eat up your esophagus. I know you are trying to cut back on caffeine but be careful of carbonated drinks. We were told the healing will take up to 2 years so habg in there.

Kathy

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Catfish, try an iron supplement a day for the bruising. I used to have the same problem until I started on the supplements, now even when I accidentally knock into something hard, it doesn't bruise. And this coming from someone who at any given time, had about a half dozen bruises on her!

Angel

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I also have more headaches.

Niteyx13, for me, the first week and a half, maybe 2 weeks, I had an on again, off again headache, that at times wasn't too bad, got real bad (for a few days), then seemed to lessen and eventually I noticed I wasn't having them anymore.

Having headaches can be normal for me, but that was a lot more than normal. I figured maybe I was going through gluten withdrawl, if such a thing exist.

But, if it helps, yeah.. I had more headaches for awhile too.

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I have been on the gluten-free diet for almost 2 years now. For myself all symptoms from diarrhea ,gas and bloating to headaches, to fibromyalgia and joint pain resolved within the first two months. Whenever my adult children or myself accidentally ingest even a microgram of gluten we react with symptoms such as the acid reflux pain,joint pain and depression. We have found that while it is difficult to adhere to a gluten-free diet, by calling manufacturers for every premade food item we have found that often things that look gluten-free on the label really aren't, many times because of crosscontamination. The most obvious in our diet was chips and snack foods, we thought great we can have all these chips when we got the first 5 page list from a prominent manu. Yea right. The thing that worked best for us was a diet composed of unprocessed foods with the exception of some of the very good gluten-free products made by gluten-free manufactorers. The diet is not bad once you get used to being a detective. You do need to be aware that you will react to things you never thought you would, like postage stamps and artists paints and wall paper paste and toothpaste, shampoos and the list goes on. We stick to meat with pure seasonings, potatoes and rice, fruit and vegtables. There are some excellent convience foods that are also gluten free, just get them from a gluten-free company. In my area Wegmans is great as they have many foods now that are gluten-free and labeled as such. Good luck the diet is tough but it is worth it. After 3 mos I was well enough to go back to work, I had been homebound for 5 years, and after 1.5 year I was well enough and confident enough that I will stay that way that I have been able to open my own store. Stick with it it's worth it.

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Dear Niteyx13,

I was reading your post and I wondered if you ever had an Endoscopy?

When I had mine they found severe acid reflux, called Barrett's ring.

I have to be "scoped" every year because it can turn into Cancer.

I don't know if you know that Ibuprofen and other meds like that

can be very hard on your stomach. My Dr. prescribed Prevacid and the

gluten-free diet. After almost 8mos on this diet my symptoms have just about

disappeared. Please be careful about the acid reflux it can cause a lot of damage

and is usually associated with Celiac Sprue. Hope this helps a little...

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Hi Everybody with reflux, heartburn and GERD symptoms:

Long before I learned my life long symptoms were celiac related, I also had 'gastritis' and acid reflux. Back then they prescribed Zantac and Mylanta (which I consumed like candy). I got tired of the side effects of Zantac and worried about the aluminum in Mylanta, :o so I eventually stopped both and just limited or avoided foods that gave me those symptoms. I later learned that overeating (past being satisfied to the point of stuffed) ALWAYS gave me heartburn and reflux. I learned to live w/o meds but had to stay perfectly vertical for several hours after meals, because I had instant reflux if I bent over and even more so if I overate. However, 2 months after going gluten free, I learned I was ALSO casein intolerant (thru Enterolab tests) and cut out all dairy. My instant reflux completely disappeared within days. I'm not sure how much avoiding gluten affected my 'recovery' from GERD symptoms, but avoiding casein certainly eliminated those. :D

BURDEE

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I am interested in hearing more about the bruising. My thigh is covered with a huge one, my knee has one and 2 more on the other leg and I have absolutely no idea where they came from. I don't take ibuprofin, or aspirin. When I was on Celebrex a few years ago I woke up with 13 bruises on my body, even my stomach and my doctor said it was spontaneous bruising caused by the celebrex. I stopped immediately and found if I even took a motrin I would get a huge bruise. Now, suddenly I'm bruising again. Could it be related to Celiac? I'd appreciate any input.

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I have never actually been diagnosed. Celiac actually first came to me from a cousin that is gluten intolerant. I started researching and I believe celiac disease is what I have. I have had all the typical IBS diagnosis, and doctors that won't listen.

I haven't had a problem with acid reflux until I went gluten-free (except when I was pregnant). Before going gluten-free I had constipation, chronic tiredness, distention, and stomach pain (among other junk). I honestly am scared with what is going on with my body. Now some days I don't really feel any better, but some I do. I also accidently ate some gluten this weekend, and I haven't seemed to have had a reaction. I am kinda afraid that I have something else going on now. Now I have waves of nausea, headaches, stomach pains, distension, joint pain, "foggy head", and just generally feel lethargic. My constipation comes and goes these days, but seems to have gotten better. Unless I have just screwed up more than I realize and start to get better but screw it up by eating gluten. I have also tried to cut down on dairy some, but I already feel like I am starving half the time.

I am waiting for insurance, but they keep asking for more information. I want to talk to a doctor before going back on gluten for testing (I refuse to assume that a doctor is willing to test me before talking to one - because I generally have a distrust in doctors these days). Finances will not allow for Entrolab right now, because we have had some set backs this last month. So, I am kinda stuck.

I am sorry for venting like a 3 year old. It's my birthday and I am not having a good day. I have a headache, and my stomach is not right, and my kids are running around like crazy people - which doesn't help the head. Thanks to everyone who has responded!

Deanna

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