Gluten-free And Symtoms Have Gotten Worse.

[sarabmore]

I was diagnosed with Celiac disease 3 years ago. I have been living on a completely gluten-free diet since then. When I was diagnosed, I really did not show any of the symptoms of Celiac Disease. I just felt like I had the flu all the time. I was so tired. My thyroid doctor is the one that spotted it, and suggested that I go to get a test. Anyway, I freaked. I was 21 at the time and I couldn't eat pizza or beer!?!!? I don't think you ever really get over the fact that you can't eat pizza.

To my point, recently, I have been experiencing more and more of the symptoms of Celiac Disease without even eating wheat. I have been tired, experiencing diarrhea, been grouchy, having stomach pains and gas. I just don't understand why exactly I am having these symptoms even though I have been living gluten-free for so long. I didn't have these problems prior to my diagnosis and I don't want to feel like this every day anymore. Does anyone else have these problems? I don't know where to go from here. I honestly feel like quitting the diet altogether and hoping all my symptoms will go away. I would much rather feel like I did before than feel like this. I have searched the internet high and low to see if anyone else has experienced these issues with no luck. Thanks!

[ShayFL]

Hi Sara,

First I understand your frustration. Let's see if we can help you. You say you dont eat wheat, but do you make sure you are not getting BARLEY or RYE in anything?? Malt? Your vitamins have E in it from unknown source?

Your hair care and skin creams, toothpaste, etc? They change formulations all of the time. It could be that you are getting gluten in a product now that used to be gluten-free.

Anything new in your life? Tell us what you eat and any other information that might help us help you.

Most people on this board STILL eat pizza....only gluten free. And I dont drink beer, but I understand that there are some really good gluten-free brands out there now. Celiacs have to learn to "think outside of the box" to enjoy the foods/beverages that they love. There is a gluten-free substitute for EVERY gluteny food out there. Even cannoli I found.

Also consider dairy as a problem. If you got some gluten inadvertently and damaged just the tips of your villi then you may need to heal for awhile before eating dairy again. The tips produce the necessary enzymes to digest dairy. So that could also explain your symptoms.

We are here to help. Talk to us.

[GFinDC]

Sounds like it could be hidden gluten getting through in your diet somehow. Do you make your own food? I eat mostly food that I cook at home. I make a couple of rice dishes to have on hand in the freezer. I know that I don't get gluten normally because I make those foods myself, and have verified my reactions to all the items in the food. Anyway, I don't know how you eat, but maybe take a look at possible problem foods in your diet. Is there something you eat that you aren't sure of?

[AndrewNYC]

I was diagnosed with Celiac disease 3 years ago. I have been living on a completely gluten-free diet since then. When I was diagnosed, I really did not show any of the symptoms of Celiac Disease. I just felt like I had the flu all the time. I was so tired. My thyroid doctor is the one that spotted it, and suggested that I go to get a test. Anyway, I freaked. I was 21 at the time and I couldn't eat pizza or beer!?!!? I don't think you ever really get over the fact that you can't eat pizza.

To my point, recently, I have been experiencing more and more of the symptoms of Celiac Disease without even eating wheat. I have been tired, experiencing diarrhea, been grouchy, having stomach pains and gas. I just don't understand why exactly I am having these symptoms even though I have been living gluten-free for so long. I didn't have these problems prior to my diagnosis and I don't want to feel like this every day anymore. Does anyone else have these problems? I don't know where to go from here. I honestly feel like quitting the diet altogether and hoping all my symptoms will go away. I would much rather feel like I did before than feel like this. I have searched the internet high and low to see if anyone else has experienced these issues with no luck. Thanks!

Could be fructose or malabsorption of some other carbohydrate/sugar malabsorption. These can mimic celiac disease and sometimes are side effect of it for awhile after diagnosis, but will eventually go away with proper dietary management, unlike celiac, where you are gluten free for life...

[TedL]

You may have other food allergies/intolerences in addition to the Celiac which could be causing the problem. One thing you could try is an elimination diet starting out with only a few simple foods. There's a lot of information on elimination diets on the Internet. I'm personally sensitive to corn, soy, buckwheat, dairy, sugar (can only tolerate small amounts) and there are several other triggers that I'm still working on confirming. While there are blood tests (such as ELISA testing) that supposedly help to determine intolerences, these are typically very inaccurate.

Unfortunately, a lot of gluten free food on the market is high in sugar and fat and often contains other common food triggers. Your best bet is to minimize the amount of packaged food until you feel better. A lot of gluten free products on the market are far from health food and can be hard to tolerate, particularly while you're still recovering.

In addition, your thyroid condition could be causing some of your health issues. People with thyroid problems sometimes don't feel well even if the TSH numbers look okay. There's a good book called The Thyroid Solution by Dr. Ridha Arem that discusses this. I recently switched from only taking Synthroid to a combination of Synthroid and Cytomel (T3) and I feel much better. You might want to investigate changing your thyroid treatment if eliminating foods doesn't seem to be helping.

Regards,

Ted

[Eric-C]

Could be fructose or malabsorption of some other carbohydrate/sugar malabsorption. These can mimic celiac disease and sometimes are side effect of it for awhile after diagnosis, but will eventually go away with proper dietary management, unlike celiac, where you are gluten free for life...

Thats my vote...it stuck with me for a while...not so much the stomach issues but the rest of the stuff you mention.

[sarabmore]

WOW, I really was not expecting a response! Thanks everyone.

To respond to a few of your suggestions:

-I mainly eat in, there is not much you can eat out. My diet consists of some sort of corn cereal like Captain Crunch, turkey roller coasters (a new name I made up, which is turkey and cheese rolled up) and potato chips and for dinner, I came home and made a meat, a vegetable and either potatoes or rice. Trust me, I never walked into the frozen foods section and bought most of my food and made it at home. And yes, I made sure I didn't eat Barley or Rye. I would feel it, and I avoided those foods. Trust me, I did stuck to the diet. (notice past tense)

- Gluten free foods suck. hahahaha. I know you all want to say it. I would buy the Rice Flour and make something and it would fall apart or taste so bad, it went in the trash. ha. If I could find a gluten-free pizza that tasted EXACTLY like regular pizza, I would cry. I would fall on my knees and thank the heavens.

A couple days after I wrote that post, I was on the phone with my mother feeling completely defeated. I said "I would rather feel tired than like this all the time." I ate a piece of potato bread and I went with my boyfriend to the local pizza shop and ate 3 pieces of pizza. Yes, I quit. I felt completely liberated. I ate a subway sub, some spaghettios and anything else I could think of. My stomach has been fine. No gas, diarrhea, no bloating. I feel great. (This all may be mental because I feel like I am unshackled). Maybe the one guy was right, maybe it is something else. I donated money to the University of Maryland Celiac Research Center and said "Screw it! I'm waiting for a cure." I'd rather feel tired all the time than feel like I did when I accidentally ate wheat. All of that can not be good for your system. I am no doctor and I will not proclaim that I am. I want more research. I'll wear my "Making tracks for Celiacs" and hope for a better day.

Thank you for all your help and I will be sure to keep ya updated on how I feel.

[GFinDC]

Wow, I hope you will reconsider the wait for research and posion yourself in the meantime idea! Seems like a pretty negative approach to things. Not trying to be down on you at all, but there are other ways to look at it.

Sounds like you have done a good job of staying gluten free for a quite a while. I have only been on the diet since last Dec-07, so not as long as you. I have thyroid problems too, and am hoping the will get better in time if I stay off the gluten. I know it can be hard to deal with the thyroid issues. And they do have a major impact on how you will feel. Being tired is one of the things that low thyroid output can cause, and difficuty sleeping etc etc etc... There are many people on this board who have thyroid issues adn take supplemntal hormones to deal with the symptoms. One thing to think about is if you are waiting for a celiac cure and the issue is really your thyroid problem, you will not get anywhere like that.

I can't do dairy yet myself, I know some people get to the point where they can tolerate dairy agin but some don't also. Lactose intolerance can cause GI symptoms including gas and D and pain also. So if you have developed lactocse intolerance that could be the cause of your symptoms even if your are strictly gluten-free in your diet. Some peoepl also report they are casein intolerant, which is different. Casein is the protein in dairy, while lactose is the sugar. The posts I ahve read generally seem to say that casein intolerance can cause mental issues (depression etc), and is not fun in general. Sorry, not syaing this applies to you, but jsut is something to maybe think about researching. The point is that even if you can tolerate dairy lactose wise, you might still have issues with it.

Bottom line is it is your choice of course and I understand the frustraion of not feeling better when you are trying really hard. It could be though that you just need to go a little further and either eliminate a few more food items (dairy or nightshades or goitrogens) or get some thyroid medication changes. Oh yeah, check out goitrogens on Wiki. Big list of foods tha tinhibit your thyroids function, and could be making you feel bad if you are eating them regularly.

I am going to attempt to post some site links that might help you with the thyroid info. Not that you asked for that but what the hey, maybe it will help someone.

Sorry for the long post, but it sounds like you are close to finding an answer to you situation if you can return to your gluten-free diet and test a few more things out.

This site has a doctor who answers questions about thyroid issues.

Open Original Shared Link

This one is the American Thyroid Association site.

Open Original Shared Link

[LuvMoosic4life]

if you were diagnosed with celiac disease, you have it, there is no false positive result. Even if you do not feel symptoms eating gluten, you are doing damage to your body, it will hit you hard in the long run.

[cmom]

You may go a long time and feel great eating gluten, until one day, you begin not feeling quite right...it continues until you finally go to the doctor and they discover that you have intestinal lymphoma in an advanced stage. What then?

[MissyH]

I agree with the above few posts..and if it was a couple of days after writing the original post..that means you went ut and ate those things on about 26th August..today is only 30th..my symptoms can take anythng up to three weeks to appear if I get 'gluten poisoned' as I call it.

If you have been diagnosed then you do have coeliac.

Liek Shay said..check out other things..toothpaste, also lipstick, lipbalm, make up, even fragrances..or being in the vicinity of wheat and gluten foods.

I once helped some friends out and made 80 odd sandwiches (with real bread) for a charity event..I didn't eat any bread at all and was sick afterwards for three weeks.

[jerseyangel]

My diet consists of some sort of corn cereal like Captain Crunch

This could be why you were not feeling better while on the diet. Captain Crunch is made with oat flour--most oat flour is contaminated with wheat and there are Celiacs that will react to even pure oats. Not to mention the cross contamination issues with the cereal itself.

I urge you to try the diet again--taking extra care to thoroughly check out any processed food you eat. Remember that Celiac is never cured, only treated with the gluten-free diet--even though you don't have any outward symptoms right now there is damage being done to your intestine. While "waiting for a cure", you are putting yourself at risk for more serious diseases down the line.

[MissyH]

This could be why you were not feeling better while on the diet. Captain Crunch is made with oat flour--most oat flour is contaminated with wheat and there are Celiacs that will react to even pure oats.

I hope you don't mind me quoting you there Jersey..but..well spotted for one..and..

Oats contain gluten full stop..part of the four to avoid..wheat. oats barley and rye so that product will have caused you a reaction..plus the less gluten foods you eat..and then you have some..your reaction cn be much worse than when you were eating gluten all the time.

[RiceGuy]

This could be why you were not feeling better while on the diet. Captain Crunch is made with oat flour--most oat flour is contaminated with wheat and there are Celiacs that will react to even pure oats. Not to mention the cross contamination issues with the cereal itself.

I urge you to try the diet again--taking extra care to thoroughly check out any processed food you eat. Remember that Celiac is never cured, only treated with the gluten-free diet--even though you don't have any outward symptoms right now there is damage being done to your intestine. While "waiting for a cure", you are putting yourself at risk for more serious diseases down the line.

So glad I wasn't the only one to catch that. Though I never even looked at the ingredients, nor have I ever tasted it, I was pretty sure it wasn't a safe cereal. The lack of it being mentioned as such on this board tells me that.

Thing is, I fear sarabmore may not return to read any more replies. There is quite a bit of frustration in her words.

Good Grief! I just looked up the ingredients:

CORN FLOUR, SUGAR, OAT FLOUR, MALTODEXTRIN, BROWN SUGAR, PARTIALLY HYDROGENATED COTTONSEED OIL AND/OR COCONUT OIL, SALT, NATURAL AND ARTIFICIAL FLAVORS, MALIC ACID, SODIUM ASCORBATE, RED 40, NIACINAMIDE*, REDUCED IRON, ZINC OXIDE, YELLOW 5, VITAMIN A PALMITATE, BLUE 1, YELLOW 6, THIAMIN MONONITRATE*, BHT (A PRESERVATIVE), PYRIDOXINE HYDROCHLORIDE*, RIBOFLAVIN*, FOLIC ACID*, WHEY.

That's supposed to be the berry flavored one, but where are the berries? It also has whey, and look at all those artificial colors! So much for getting a decent breakfast!

[MissyH]

I fear she may not come back too.

However..if we are honest I think most of us (?) have been through the same kind of stage.

A different post reminded me of mine today (only been on here a few hours too!)..my tum shut down..I'm not even diagnosed as Coeliac..when my tum shut down I had major doubts about my wheat intolerance diagnosis...but..it's there..and I know it.

I think all people can do is accept that sometimes we all get fed up..we would all love a fresh sandwich..and we get frustrated..it's natural.

We just need to realise it and welcome folk back when they have gone through it...cos I know I get frustrated sometimes..and cheat sometimes..and I pay the price afterwards.

It's a tough thing to deal with because every shop, every street corner..food we can't eat..it's a struggle to find something if you are out and get hungry!

[sarabmore]

Awe, I'm back. I will check this because it is my only method of coping. I appreciate all your kind words.

I'll be honest. When I read "try cutting out more things." IT MAKES ME GO INSANE. Why can't I just be normal? I just want to do the diet because I want to not because I am scared into it. One lady said "you'll get some stomach disease." I understand my risks. I do. My father has had celiac disease for his entire life. (When I was diagnosed, they found out he has had it too.) He is as stubborn as me. He is still kickin. He has no stomach problems. (Not to say that he won't).

My thyroid levels have been pretty consistent for years now. I was diagnosed when I was 10. I went from being hyperthyroid to hypothyroid after radioactive iodine treatment when I was 16. Ever since then, they never told me my labs were off. The only reason why my thyroid doctor tested me for it was because I said I was tired all the time. He is really the only doctor I trust.

Another reason why I am quitting (for now) is because I've gained 20 pounds in 2 years. I was skinny and NEVER had any issues with my body. Now, I feel like a boat. I can't even look at pictures of myself without feeling disgusted.

My plan is to eat wheat and try it out. So far, I've been ok. After the 4th day or so, my stomach got bloated. It hasn't been perfect, but my mind is at ease. I feel happy and unconstrained. I think when I feel ready to give it up, I will. I'll keep ya updated. I guess when I come back I'll stop eating Captain Crunch (YIKES!!!!!!!) =)

This helped:

"I think all people can do is accept that sometimes we all get fed up..we would all love a fresh sandwich..and we get frustrated..it's natural."

[Genie75]

It's quite possible you have Irritable Bowel Syndrome as well. IBS is a very difficult condition to deal with, and there are special diets to deal with IBS, and many IBS triggers, and a lot of the triggers differ for different people. I have to deal with both IBS and Celiac Disease unfortunately, which makes things very tricky and I have a lot of days where I feel completely defeated as well. And I have had days where I was tempted to go back to eating glutens again, but I know I will only be so much worse if I do.

I think the tricky thing about eating gluten free, is how to get enough fibre. In my own personal case, this is very tricky. I can't even handle gluten free breads, becuase they seem to stick in my insides and cause the IBS attacks. And if I get too much fibre, I don't do well either. I am pretty much stuck with eating whole foods and following the paleo diet. Meat, eggs, fruit, and root veggies. And my biggest problem is sticking to that diet! If I can get the hang of that, I would probably be a lot happier and healthier.

I would recommend adding a soluble fibre supplement to your diet. That's what I have done recently and it has been making a huge difference.

I was diagnosed with Celiac disease 3 years ago. I have been living on a completely gluten-free diet since then. When I was diagnosed, I really did not show any of the symptoms of Celiac Disease. I just felt like I had the flu all the time. I was so tired. My thyroid doctor is the one that spotted it, and suggested that I go to get a test. Anyway, I freaked. I was 21 at the time and I couldn't eat pizza or beer!?!!? I don't think you ever really get over the fact that you can't eat pizza.

To my point, recently, I have been experiencing more and more of the symptoms of Celiac Disease without even eating wheat. I have been tired, experiencing diarrhea, been grouchy, having stomach pains and gas. I just don't understand why exactly I am having these symptoms even though I have been living gluten-free for so long. I didn't have these problems prior to my diagnosis and I don't want to feel like this every day anymore. Does anyone else have these problems? I don't know where to go from here. I honestly feel like quitting the diet altogether and hoping all my symptoms will go away. I would much rather feel like I did before than feel like this. I have searched the internet high and low to see if anyone else has experienced these issues with no luck. Thanks!

[sarabmore]

Ok, so I have been eating Gluten since August 25th. At first, everything was fine. I had a few incidents where I was rushing to the bathroom. After that, everything bathroom wise has been okay. I feel gassy and tired, but no more than usual. I have been considering going back to the diet. I just felt like I had to give it one last HOO-RAH. I want to make the decision, not my doctors. I pigged out on pizza, lasagna, pasta, frosted mini-wheats, subs...etc etc. I EVEN took a sip of beer (for some reason, it was disgusting to me) The whole process was COMPLETELY LIBERATING. But, after watching numerous videos and seeing the insides of a person with celiac disease, I might return. I know you have all felt like this. 3 years I live gluten-free. I have to give it to myself. I'm suprised I didn't snap before then! I wouldn't reccommend what I have done, but it shows that this diet does make you feel tied down.

I will keep you informed when I make the switch.

Reading this forum has been GREAT!