Indigestion/heartburn With Celiac Disease

[spitfire]

Hi

I am new to the forum. I am being tested for celiac disease and just had an gastroscope yesterday. My doctor says that he is almost certain I have it given my labs.

What I need to know is if the symptoms I am having which I havent seen listed on the information regarding celiac disease, are, indeed from the disease.

I am having almost constant indigestion/heartburn. From what I read you can also become lactose intolerant too. Would even taking a few sips of coffee with cream in it have such an instant reaction? I am very frustrated that my doctors seem to be dismissing my symptoms. I am miserable with this almost constant discomfort in my chest. Is there anything that may help relieve this other than Tums-which doesnt touch it.

Thanks in advance for any imput anyone can share with me.

spitfire

[Roda]

My main GI complaint was horrible heartburn/reflux. The reflux was new and nothing would touch it. I did eat a lot of tums and tried to be careful what I ate. At one point even water would set me off. I am stubborn so I refused to take PPI's. I would occasionally take a Zantac (it's an H2 blocker) when it got really bad. I wanted to know "why" I had the reflux, not just cover it up with a bandaid. I battled this for 2 years off and on until I was diagnosed.

I'm happy to report that the reflux was the first symptom to resolve after I went gluten free. It was noticibly gone after about 2-3 weeks. I don't have a need to take anything unless I just over indulge with certain foods(gluten free of course )or I get glutened by accident.

About 1.5 years after I went gluten free I was having reflux and stomach pain again. I went in for a repeat scope and was found to have an ulcer. Again I refused the PPI meds but agreed to take Zantac to heal it. I was supposed to take it for 6 months but stopped it at 2. I can tell the ulcer is healed. I also discovered during that time I was reacting to gluten free oat cross contamination. I believe this is what caused my ulcer and trouble I had during that time.

Now that all your testing is done you can go gluten free. Hopefully after some time the reflux will resolve. In the meanwhile there is no need to suffer.

[flowerqueen]

It certainly sounds like Coeliac disease. I had given up eating wheat and gluten before I was tested and started to feel much better, only to be told I had to eat the stuff just to get the biopsy and my symptoms were worse than before. I made my mind up there and then that even if it was Coeliacs (which it was) I would stop eating wheat and gluten as it must be some kind of intolerance. I waited it out and sure enough the tests came back positive for Coeliacs.

You can either wait it out till you get your test results or give wheat/gluten/dairy up regardless, if you feel they are a problem. If you can bear it (if you are reluctant to give up wheat etc.) wait for your results, as once you have given them up there's no going back.

Hi

I am new to the forum. I am being tested for celiac disease and just had an gastroscope yesterday. My doctor says that he is almost certain I have it given my labs.

What I need to know is if the symptoms I am having which I havent seen listed on the information regarding celiac disease, are, indeed from the disease.

I am having almost constant indigestion/heartburn. From what I read you can also become lactose intolerant too. Would even taking a few sips of coffee with cream in it have such an instant reaction? I am very frustrated that my doctors seem to be dismissing my symptoms. I am miserable with this almost constant discomfort in my chest. Is there anything that may help relieve this other than Tums-which doesnt touch it.

Thanks in advance for any imput anyone can share with me.

spitfire

[GFweightlifter]

I had terrible acid reflux before going gluten-free and now it's virtually gone. Some fruits and veggies can trigger it, but not like it was before.

I am also lactose intolerant. I was fine up until a few years ago when all my symptoms appeared. Lactose intolerance was one of the first of many symptoms. After 3 months gluten-free I've noticed it's a little better. I hope it goes away someday! I've learned to stick to aged cheese (sharp cheddar, some mild cheddar, swiss, parmesan), butter, full fat greek yogurt, and I put heavy cream in my coffee. All these are tasty and have almost no lactose. I can handle a little ice cream but absolutely no milk. Milk makes me so sick!

I also get an indigestion feeling right after I eat certain foods, IDK if it's like what you get but I feel like I get punched in the gut RIGHT after I eat certain foods and it hurts and burns at the same time like awful for 5- 10 minutes then it goes away. Happens when I eat apples, apple juice, and sometimes when drinking beer (before I was gluten-free- no more beer now except for that crappy sorghum beer LOL). I don't get that feeling from lactose though. My lactose symptoms show up a few hours after eating- gas, bloat, cramps, diarrhea.

[spitfire]

Hi Everyone,

Thank you so much for all your replies and reaching out! Since I wrote last my symptoms have improved a bit since following a gluten free diet---though I can still feel it like its waiting to come back again...I have cut out dairy products for now as well just to make sure I am doing all I can to avoid triggering heartburn/indigestion. It truly has been an awful experience to say the least. Its one thing to have it for an hour or two, but to have it constantly for days was just agonizing for me. It kept me from sleeping pretty much all night. It stinks to have to rethink everything you put in your mouth, but I guess there could be worse diagnoses to have been given. Those of you who have had it, do you ever feel totally normal again?

GFweightlifter -- thanks for your imput on the dairy scene. I am a java junkie and I have even cut that out for now because of the half and half i usually have in it. I have opted for the iced tea for now and I have to tell you --- I MISS MY COFFEE!!!! lol... Obviously you are into fitness - do you find that working out helps with your symptoms? I am a runner (5k on the treadmill about three or four times a week-outside proves very hard on my legs). I havent run in a couple of weeks because I became so ill with my symptoms, but usually I feel better after my run no matter how I felt before it. Like a stomach ache, being tired.

Again, thank you all for sharing your experiences with having celiac disease. This is a great community and I look forward to keeping in contact with you all and exploring this wonderful site. I don't feel so alone now...lol

Hope everyone is feeling good today!

spitfire

[LauraB0927]

I too had moderate acid reflux (self-diagnosed) and it wasn't due to an ulcer (as my endoscopy confirmed). I also had terrible chest pains that stumped the doctors - it got so bad one time that I went to the hospital twice in one day because I thought I was having a heart attack (I am 28 years old and should not be experiencing those symptoms). I am happy to report that since going gluten free these symptoms have gone away (knock on wood they dont come back!).

I am happy to hear that you are finding this forum helpful - you definitely learn a lot and get validated and support from everyone!! Please let us know how you're doing. Best wishes!

[Katie C.]

Hi

I am new to the forum. I am being tested for celiac disease and just had an gastroscope yesterday. My doctor says that he is almost certain I have it given my labs.

What I need to know is if the symptoms I am having which I havent seen listed on the information regarding celiac disease, are, indeed from the disease.

I am having almost constant indigestion/heartburn. From what I read you can also become lactose intolerant too. Would even taking a few sips of coffee with cream in it have such an instant reaction? I am very frustrated that my doctors seem to be dismissing my symptoms. I am miserable with this almost constant discomfort in my chest. Is there anything that may help relieve this other than Tums-which doesnt touch it.

Thanks in advance for any imput anyone can share with me.

spitfire

Terrible reflux &heartburn were just some of the symptoms my daughter had before her diagnosis of celiac. Her gastro put her on omeprizole for many months to heal her esophagus. It was very helpful, even though she ate strictly gluten free. Her body needed protection and time to heal.

[Liesie]

Hi,

I've been recently diagnosed with Celiac, but I am experiencing severe stomach cramps.

I have changed my diet to GLUTEN FREE is the cramps normal.

[LauraB0927]

Hi,

I've been recently diagnosed with Celiac, but I am experiencing severe stomach cramps.

I have changed my diet to GLUTEN FREE is the cramps normal.

Welcome to the forum! Definitely start a new thread with this question so you can get more responses. It seems that it is normal to have some ups and downs as you're trying to heal - remember, you body is now being able to absorb foods that it might not have been able to before. Also, keep in mind that more food intolerances may pop up as you're starting your gluten free diet like soy, dairy, and corn. Are you eating a lot of dairy? A lot of us become lactose intolerant for a bit while the microvilli in our intestines begin to heal. If you're eating a lot of dairy, cut it out of your diet for a while, see how you feel, and then try to reintroduce it down the line. Definitely read the newbie thread at the top of the page, its very helpful!

[GFweightlifter]

Hi Everyone,

Thank you so much for all your replies and reaching out! Since I wrote last my symptoms have improved a bit since following a gluten free diet---though I can still feel it like its waiting to come back again...I have cut out dairy products for now as well just to make sure I am doing all I can to avoid triggering heartburn/indigestion. It truly has been an awful experience to say the least. Its one thing to have it for an hour or two, but to have it constantly for days was just agonizing for me. It kept me from sleeping pretty much all night. It stinks to have to rethink everything you put in your mouth, but I guess there could be worse diagnoses to have been given. Those of you who have had it, do you ever feel totally normal again?

GFweightlifter -- thanks for your imput on the dairy scene. I am a java junkie and I have even cut that out for now because of the half and half i usually have in it. I have opted for the iced tea for now and I have to tell you --- I MISS MY COFFEE!!!! lol... Obviously you are into fitness - do you find that working out helps with your symptoms? I am a runner (5k on the treadmill about three or four times a week-outside proves very hard on my legs). I havent run in a couple of weeks because I became so ill with my symptoms, but usually I feel better after my run no matter how I felt before it. Like a stomach ache, being tired.

Again, thank you all for sharing your experiences with having celiac disease. This is a great community and I look forward to keeping in contact with you all and exploring this wonderful site. I don't feel so alone now...lol

Hope everyone is feeling good today!

spitfire

Hey Spitfire!

Yes, I'm definitely into fitness. Weightlifting (more of the powerlifting type- but starting to get into olympic lifting) is my first love, but lately I've started running and biking a little.

In answer to your question about whether it helps my symptoms, the answer is yes and no. I was lifting really heavy when my symptoms were at their peak, before going gluten free, and it really burned me out. I don't think my damaged body could keep up with the stress I was putting on it and I don't digest most food really well, so I think my body just couldn't get the nutrition it needed to keep up with my workouts. For like 2 years I was off and on with my workouts, I would try to push too hard, then get burned out after a month and quit for a month or two before trying again. However, light to moderate exercise seems to make me feel better. It helps tremendously with my mood, and a light lifting session seems to make the fatigue, cramps and bloat go away (or at least lessen) a lot of the time and I feel better. It also makes me feel strong and capable, which gives me the motivation to keep working on getting my health back.

I've learned that I have to take it easy and progress more slowly when I workout, which was hard for me because I like to push myself, but taking it easy makes me more consistent in the gym and I've found that I'm almost back to where I was a year ago in terms of strength. Maybe cutting back on your running for a bit might help? That way you can still get some running in without getting burned out, or getting that overwhelmed feeling when you're tired and you don't want to go do your running. I feel that way a lot too. I'll be really tired and worn out and I'll dread my lifting session and it's hard to make myself go. When I feel that way I'll still go to the gym, but I'll do something fun and light.

Anyway, good luck with everything! And keep sticking with your diet, it takes awhile sometimes. I quit gluten over 3 months ago and I felt really good the first week, then it went back to feeling like I did before gluten-free, and then like a month ago things just improved DRAMATICALLY. It really sux to have to avoid a lot of tasty food and it is a big lifestyle change, but I tell you, when you start to feel better it is sooo worth it!

.

[spitfire]

Terrible reflux &heartburn were just some of the symptoms my daughter had before her diagnosis of celiac. Her gastro put her on omeprizole for many months to heal her esophagus. It was very helpful, even though she ate strictly gluten free. Her body needed protection and time to heal.

Hi Katie C...

My doctor also put me on the same medication. When I went in for a follow-up and the NP read my report, I understood why I was so miserable. I had 'rings' on my esophagus and it was inflamed as was my stomach lining. I was also given this also to help heal. For the most part I feel much better, but I think I know when I possibly have gotten some gluten through maybe cross-contamination. I get the feeling of indigestion/heartburn.

Can anyone tell me if you get gluten by accident (and believe me I think and re-think everything I eat) does it set you back to the beginning immediately, meaning is the damage done again just like that. Or are the symptoms saying uhmmm, you messed up? lol.

I am finding that going out to eat to a restaurant is the most challenging. Especially when we were on vacation in Provincetown, MA. Most of the eaterys are not gluten free friendly and I always feel like a real downer when trying to be upbeat about my limited choices on the menu. I suppose one day I'll get a grip on all this. I'm so thankful for this forum and website.

[shadowicewolf]

I have been dx'd with GERD (the biggest pain the the butt outside of celiac imo). I was tried on many medications and none worked. I finally went cold turkey (DO NOT SUGGEST THIS), and it lessened some. Now i have to watch everything i eat; no grease, spicy, or overly rich things or else it sets it off. I also have to eat something every so often or else it gets me. I too had damage in my throat (which took like a year to heal, but lets not go there).

As for vacations and whatnot, i would suggest staying at a place where you could cook your own meals and researching the resturants before hand. I generally do not go out to eat.

[NorthernElf]

I had years of bad reflux to the point of being on a variety of meds...nexium and a few others. They were not entirely effective. Going gluten free all but put an end to my reflux issues. In fact, if I start getting any reflux issues I have to analyze my diet & see if I might have glutened myself ! Alcohol can cause me reflux, especially with fatty food.

As for dairy, it has always bothered me somewhat. I do have creamo in my coffee and some hard cheese but I couldn't drink a glass of milk without having issues.

Good luck - it's sort of hit & miss, esp. in the beginning. I think the biggest problem is that if you do gluten yourself, it's like everything bothers you. Myself, & others, have even questioned gluten free foods here as to their gluten content because when you get zinged, it's hard to tell what did it amd of something is still getting you !!!!

[joolsjewels]

I have terrible GERD, but of course i also had my gallbladder removed before i was diagnosed as gluten intolerant. I do not think i would do the same now, but i can not change it now! For me, it has never improved. I am on several meds for acid reflux. To the person who mentioned coffee, what brand are you drinking? Have you thought of changing brands? Some are more acidic. Some contain gluten. Starbucks coffee contains gluten. I become sick within minutes. In fact, that was one of the first products that i eliminated years ago. All i knew was that it made me sick!

I know one's Gluten-Free status can be overwhelming in the beginning, but i would rather go my entire life without gluten than to go back to how life use to be. Maybe vacation was a bit too soon after your diagnosis. You will soon get use to it and in future learn to plan ahead by going on the internet to scope out eateries that have Gluten-Free menus and finding good grocery stores before going on vacation.

[psawyer]

To the person who mentioned coffee, what brand are you drinking? Have you thought of changing brands? Some are more acidic. Some contain gluten. Starbucks coffee contains gluten.

I don't doubt that Starbucks coffee made you ill if you have GERD, but I drink it regularly. Please cite your source for the claim that it contains gluten.

[joolsjewels]

Psawyer, Sorry I was not clear enough. I gave the brand of the person's coffee's as an example.

There is gluten in Starbucks. Can I quote chapter and verse? no, but I found this out last year, I believe, when Starbucks announced they were was updating on of their drinks as gluten free. I think it was the bottled frappes. The article noted that not all of their drinks are gluten free. The Ah Ha Light went on for me knowing that for years previous to my diagnosis I had to avoid Starbucks. Within minutes of having one of their coffees, I was running for the restroom and stayed there for a very long time. I had no idea why. I have not drank Starbucks for many years.

My continuing GERD is a combo of my difficulty over giving up lactose and a deep love of all things tomatoe. BBQ sauce, spaghetti sauce, tomatoes with salt, salsa, tomatoe soup, etc, etc . . . In short, I love a bit of acid on my food. So no gallbladder+acid=

[shadowicewolf]

Technically, the drinks are gluten free. However, you have to ask them to clean the equipment before use. Its a big CC risk.

[psawyer]

Psawyer, Sorry I was not clear enough. I gave the brand of the person's coffee's as an example.

There is gluten in Starbucks. Can I quote chapter and verse? no, but I found this out last year, I believe, when Starbucks announced they were was updating on of their drinks as gluten free. I think it was the bottled frappes. The article noted that not all of their drinks are gluten free. The Ah Ha Light went on for me knowing that for years previous to my diagnosis I had to avoid Starbucks. Within minutes of having one of their coffees, I was running for the restroom and stayed there for a very long time. I had no idea why. I have not drank Starbucks for many years.

My continuing GERD is a combo of my difficulty over giving up lactose and a deep love of all things tomatoe. BBQ sauce, spaghetti sauce, tomatoes with salt, salsa, tomatoe soup, etc, etc . . . In short, I love a bit of acid on my food. So no gallbladder+acid=

Is there gluten at Starbucks? Absolutely yes.

Is it in the plain coffee? No. It is dispensed directly from the urn into the cup--almost no chance for cross-contamination.

Is there gluten in some of the fancy drinks? Yes. The iced frappuccino is one example. At least in Canada, the chocolate contains malted barley.

Is there a cross-contamination risk? Yes. There is at every manufacturing facility, and Starbucks is no exception.

I drink Starbucks coffee without hesitation.