Acid Reflux Contuinues... Help!

[Tigercat17]

Hi All!

 

I really need help...

 

I am still struggling with serve acid reflux. I just feel horrible.. Just a little background info on me - I've been gluten-free for almost 5 years and after I healed I felt great on the diet for the last 4 years. I've had no problems except if I went out to eat and maybe got a little CC, but nothing that lasted for week or months. In the last 9 weeks my acid reflux came back and I'm still trying to figure out if I'm getting CC of gluten in my system. Acid reflux, weight loss, insomnia , sore throat are always my symptoms if I ever get accidentally glutened, so I started a food journal again for the last 3 months. I got rid of a few items that I was eating regularly. I first I thought it was Almonds, then miracle whip and then I stopped all my vitamins just to make sure it wasn't one of them. So after a month I still wasn't getting better, I thought maybe it's my thyroid medicine.. So I asked my endo doctor to change my thyroid meds to see if I was getting CC from them. I changed from Lannett (generic brand) and I'm now taking Levoxyl... I have to say I did have an itchy rash for the last four months that I had to get steroid cream for and it did go away after I changed my thyroid med. And I did gain a few pounds, so to me at first I thought that must be the culprit, but I am still struggling with acid reflux, I'm so painfully bloated.. Then last week I noticed a pattern - I couldn't sleep every time I ate Bumble Tuna Light that same day, so I thought maybe I was getting CC from that.. I stopped eating that 4 days ago.. So now I am eating very few processed foods and I still don't feel better. Maybe it's going to take a while? .. I feel like I'm now starting to lose my voice.

 

 

And my throat and chest are killing me. So, I've been taking Pantoprazle (genric Protonix) 40mg for the last 6 weeks with no real relief and my stomach hurts all the time. I feel so bloated and gassy on this medicine.. I still got that pain on my left side under my rib cage (that is another of my glutened symptoms)... and I'm worried that I may be getting CC from this medicine.. I feel like I'm just so sensitive.. Or maybe I just don't do well on ppi's??? Is it normal to feel bloated when on ppi's? I took them 6 years ago when I had GERD and they didn't help me at all.. Eventually they hurt my stomach so much I had to stop taking them. I had to stop them cold turkey..and that was painful!!  The only way I got rid of the acid reflux was going strictly gluten-free and eating mostly wholefoods and making sure my medicine was gluten-free.

 

 

So, my question is.. is anyone taking Pantoprazle without any problems? The company says it's gluten free and I called other acid reflux meds and so many of them say they can't guarantee that their product is gluten free or not. I did stop the Pantoprazle for three days last weekend to see how I felt.. my stomach was feeling better - I felt like food was moving in my intestines again, but my throat got so much worse.. It was so painful that I thought I have to get back on them. I guess I got the acid rebound and I didn't know what else to take.. ugh...

 

I thought about trying Zantac too, but they say they can't guarantee it's gluten free either.. Do you all think I should try taking Zantac instead of this ppi I'm on? Maybe it might be easier on my stomach? I haven't tried Zantaz yet,  I'm just worried about getting CC from them. Is anyone taking Zantac without problems?

 

 

So right now the only processed foods I'm eating are: (all of these producst I've been eating for years)

Ancient Harvest Quinoa

Uncle Bens Brown Rice

Udis Bread -Multi grain

Jiff peanut butter

Smuckers grape jelly

Kraft - cashews

Silk unsweetened almond milk

Walmart swiss cheese -say they're naturally Gluten-free

Walmart (Great Value) Butter

Olive oil

Lays Stack (eating twice a week)

McCormick seasonings (been using them for the last five years without problems)

Lipton Green Tea

 

**Bumble Bee Tuna Light - I just stopped this 4 days ago since I was having a reaction to it. I noticed every time I ate it in the last 2 months I couldn't sleep all night and then I had horrible reflux the next days after...   It's weird because I've been eating this for the last 5 years without any problems.. unless the company changed something in the last few months? Could this be the culprit?

 

Toothpaste - Chest 3D white

 

The rest is mostly fresh fruit, veggies and meats. (mostly chicken and salmon I do the best on) I noticed beef makes the acid reflux worse.

 

Meds I'm taking:

Levoxyl (brand name)

Pantoprazle 40mg (generic Protonix)

 

 

Does anyone see anything that I'm not seeing? I have been eating these foods for the last five years without any problems.. only the meds are different, so I'm just freaking out as to why all my gluten symptoms are back..

 

Also, I do have cats and fish and they do eat gluten, but I always wash my hands after I feed them and always before I touch any food in the kitchen.

 

I'm just at a loss... I have been trying to figure this out, studying my food journal along with my symptoms.. it's so crazy because just three months ago I felt amazing and I now I feel so sick..

 

And I did get my thyroid levels checked last months. Everything was fine. I even asked my GI doc to check my antibodies and it was at 8. I think because I've been gluten-free for a long time if I'm getting CC it's not going to show up in the blood work..

 

Any help would be much appreciated!! Thank you!!

[ravenwoodglass]

Are you eating anything that has soy in any form? I developed problems like yours after a time gluten free and finally figured out soy was an issue. Check and see if the tuna has soy in it. Most of them do in the broth. When I get soyed I find it helpful to take Pepto Bismal liquid rather than an acid reducer. You might want to give that a try if there isn't a reason you can't take it. For me it would end the pain within one or two doses.

Don't know if that is your issue but worth checking.

It would be a good idea to switch the kitty to gluten free food.  

Hope you find the cause soon. Don't rule out that it may not even be intolerance related and check with your GI if you don't get relief soon as you may need an endo to make sure something else isn't going on.

[seejenrun]

My son is not celiac. He is gluten intolerant and has IBS and a number of other food allergies. He takes zantac 150mg twice a day and it has eliminated his reflux. I hope you can figure it out. Good luck.

[flowerqueen]

Hi,

What stood out from your post, was the fact you are eating Quinoa. For all it is supposed to be gluten free - technically. It can actually mimics the protein found in wheat and gluten and some coeliacs can't actually eat it, as it makes them suffer the same symptoms as when consuming gluten/wheat. This happened to me and I stumbled up information on the Internet by pure fluke and was able to eliminate it within a week of consuming it, it took more than a week before I improved though. Obviously, it may not be the same for you, but I suggest you take it out of your diet and see if you get any improvement.

Other than that, I would keep a food diary, and write down everything you eat and drink (at the time of eating it, not later in the day, as it is easy to forget things). Hope this helps.

One last thing, dairy intolerances can also cause similar symptoms to what you have described- I can't consume any dairy products.

[GF Lover]

Have you considered that this has nothing to do with food or medications?  You don't go 5 years fine and then hit a wall.  We age and other things will continue to go wrong and we'll get sick.  

 

If you take food and Meds out of the equation and just look at your symptoms that suddenly started, you may come to a different idea about what might be wrong.

 

Good Luck.

 

Colleen

[cyclinglady]

Maybe new intolerances? Colleen is right that our bodies change as we age. (We eat Miracle Whip all the time, so no worries there!)

Recently, a member pointed out that even though a med might be gluten free, if the pharmacy is sorting and counting pills there is a chance for cross contamination. I take Zantac (Costco brand) occassionally for allergy-related symptoms, so that is gluten-free (and no, I am not confusing it with Zyrtex which I also take).

Did your doctor want to scope you? Something is not right and just throwing meds at you is not the answer (been there and done that!)

[cap6]

I agree with the above responses!   As the pharmacy to use a clean pill sorter and that will cut out your c.c. chances there.  And yes, dairy and soy can cause issues.  Costco (Kirkland) brand tuna has no broth and no soy added to it so that could be an option for you.

[Googles]

I found my cat's food was causing me problems. I transferred them over to gluten free food and it helped cut down my gluten cc a lot. Even thought I washed after feeding them and before cooking, they liked to clean themselves after eating and I think that it was then transferring to me and things they moved around to in the house. 

 

I also second that it could be a new issue. I recently had to go dairy free because I started having D. But I had been fine for almost 6 years after going gluten free before starting to have (identified) issues with dairy. 

[StClair]

Just a few ideas to offer, along with sympathy from someone who has struggled with acid reflux. First, you might try cutting the quinoa out of your diet. It gives me acid reflux, and when looked it up I found that this is not uncommon, even in non celiacs. When I was weaning off Prilosec, I was prescribed Pepcid which seemed to do something, but it was only going completely gluten free that started the healing process. I followed the strict "induction diet" for at least a month in the Koufman book, Dropping Acid: The Reflux Diet. This helped the healing immensely. My friend with Barrett's Esophagus is getting some results with that diet also. Best of luck and hope you feel better soon.

[Tigercat17]

Hi everyone!

Thanks so much for all your ideas and comments! I really appreciate the help! They really made me think... I did stop the Quinoa yesterday. Crazy because I've been eating it almost everyday for the last four years. But hey it's worth a shot and I do believe my throat feels a little better since I stopped, so maybe my system is a little off and quinoa is hard to digest? Anyway.. whatever helps the throat pain...

Also, I did buy gluten free cat food for the cats. The only thing is Chloe is so picky! I used to have them on Gluten-free food a couple of years ago and then I switched back because she got so skinny and I was feeling fine. I didn't think it was a big deal, so had them on gluten food again, but I do see your point. I pet them all the time, then I'm touching my face, then I'm eating and touch my face... So yeah, I'm changing them back to gluten-free.. It's going to take a while until I find a brand that Chloe likes. My other cat, Bella loves it so I don't have to worry about her.

And I think my generic Protonix was cross contaminated.. When I got a new prescription once again I couldn't sleep all night and then I got a huge cold sore on my chin..(that's another gluten symptom for me) I called my doctor and they told me to stop them and I did stop them for three days.. But I really wasn't sure that was the culprit..My stomach felt so much better, but my throat and chest was really hurting, so I started them back and guess what I got three more cold sores and now I'm having trouble sleeping every night... ugh... I feel horrible...

So I called my doctor today again and they told me to stop them again and try Zantac 150, so that's what I took today. I'm just hoping that I don't get CC from that too.. I hate these medicines.. I wish I never started the protonix... The ppis didn't work on me 6 years ago at all. Nothing really did.. Only the GERD diet, a strict g- free diet and food journaling to find my trigger foods.

I also stopped eating soy for a little bit too. The tuna did have soy in it. I know when I was newly diagnosed I couldn't eat much of it at all. Seems like I can tolerate a small amount in condiments.. So I'm watching how that goes too. I just think my small intestines is inflamed again because of CC and a lot of the foods I normally eat, I can't eat right now..

I did see an ENT last week and she scoped my throat. She didn't see much at all except for post nasal drip. She thinks I'm dealing with acid reflux and allergies, so I've been using a salt water nasal rinse everyday too. I think that's helping a little. I'm just trying to get this throat and chest pain under control. I even stopped eating Udi's bread. It seems like that could be a trigger too.

Thanks again everyone for your help! I'll keep you posted on how things are going.

[StClair]

I feel you on the PPIs not working, and then the difficulty of weaning off of them. Six weeks of Prilosec, a week of that double dose, and I got no results. Like you, it was only the gluten free diet and the low acid diet that gave any relief. It is so much better now at the three month (almost) gluten free mark. I am still careful about acid foods and may never eat deep fried or citrus or tomatoes, etc, again, but then again I may trial those if I ever start to feel really healed. If the healing keeps up I may not even need the scheduled scope in August. Fingers crossed.

[ravenwoodglass]

Be sure that you do the switch in foods gradually for your fussy cat. Mix 3/4 gluten food with 1/4 of the gluten free for a few days then slowly decrease the amount of the gluten food and increase the gluten-free kind. That may help the fussy eater. One of my kitties had a hard time with the switch also and it can be frustrating.  She wouldn't eat the more expensive stuff I got her, the brat, but enjoys 'Goodlife'.

[janeycar]

You sound so much like I did a few years ago with many of the same symptoms. I tried many prescription acid inhibitors and was basically told by a doctor that it was all in my head. After I stopped on my own I felt a little better but this was before Celiac diagnosis.  Are you aware that there is lactose and gluten in many drugs? Lots of times the pharmacists are not helpful and I wonder if the spokespeople at the 800 numbers actually know whats in the medications. There is a website: www.glutenfreedrugs.com that I have found helpful. It lists the drugs by manufacturer and if there is gluten, lactose, corn, etc. in the pills. I wish I had known about this years ago and before I was paying a lot of money to have my drugs compounded, which is another option.

 

Good luck!

[Whole30-Paleo Diet]

Hi I cam across your post searching for gluten free meds as I am having a reaction to a med that I have been on for over 8 yrs and an generic I recently started getting has gluten in it. I have totally changed my diet lost 100 lbs without intense exercise. I was headed for a mobility chair but in 8/13 I changed my diet firat starting with Wheatbelly and a continued research. 

First let me say I hope your feeling better by now it has been a while since you posted this as I know the severe discomfort this all creates.  I have been on a the Whole30 food lifestyle since 10/15 and it has been a big relief for me and my wife. You may have been having a problem with the tuna due to soy being in it via the vegetable broth. There are soooo many ways they sneak a filler or binder into the food supply and it wrecks havoc on our bodies.

You may find some really good information on the whole30 website, there is a book but you don't have to buy the same information is on the site. The book is convenient. I have found that if people usually have other problems if they have a gluten or wheat intolerance, like soy and many food preservatives. My wife changed her diet with me but she had no issues, however she was experiencing a swelling of her legs, feet and ankles.  She can't tolerate cheese and maybe soy now.

I offer this as a possible relief you may need to examine your food for more than gluten or wheat as I and my wife did. My older sons girlfriend also had many many issues and once switching to whole30 diet she got immediate relief.

I hope this helps.

Paul

[Mshell]

On June 22, 2015 at 11:19 AM, Tigercat17 said:

Hi everyone!

 

 

Thanks so much for all your ideas and comments! I really appreciate the help! They really made me think... I did stop the Quinoa yesterday. Crazy because I've been eating it almost everyday for the last four years. But hey it's worth a shot and I do believe my throat feels a little better since I stopped, so maybe my system is a little off and quinoa is hard to digest? Anyway.. whatever helps the throat pain...

 

 

 

Also, I did buy gluten free cat food for the cats. The only thing is Chloe is so picky! I used to have them on Gluten-free food a couple of years ago and then I switched back because she got so skinny and I was feeling fine. I didn't think it was a big deal, so had them on gluten food again, but I do see your point. I pet them all the time, then I'm touching my face, then I'm eating and touch my face... So yeah, I'm changing them back to gluten-free.. It's going to take a while until I find a brand that Chloe likes. My other cat, Bella loves it so I don't have to worry about her.

 

 

 

And I think my generic Protonix was cross contaminated.. When I got a new prescription once again I couldn't sleep all night and then I got a huge cold sore on my chin..(that's another gluten symptom for me) I called my doctor and they told me to stop them and I did stop them for three days.. But I really wasn't sure that was the culprit..My stomach felt so much better, but my throat and chest was really hurting, so I started them back and guess what I got three more cold sores and now I'm having trouble sleeping every night... ugh... I feel horrible...

 

 

 

So I called my doctor today again and they told me to stop them again and try Zantac 150, so that's what I took today. I'm just hoping that I don't get CC from that too.. I hate these medicines.. I wish I never started the protonix... The ppis didn't work on me 6 years ago at all. Nothing really did.. Only the GERD diet, a strict g- free diet and food journaling to find my trigger foods.

 

 

 

I also stopped eating soy for a little bit too. The tuna did have soy in it. I know when I was newly diagnosed I couldn't eat much of it at all. Seems like I can tolerate a small amount in condiments.. So I'm watching how that goes too. I just think my small intestines is inflamed again because of CC and a lot of the foods I normally eat, I can't eat right now..

 

 

 

I did see an ENT last week and she scoped my throat. She didn't see much at all except for post nasal drip. She thinks I'm dealing with acid reflux and allergies, so I've been using a salt water nasal rinse everyday too. I think that's helping a little. I'm just trying to get this throat and chest pain under control. I even stopped eating Udi's bread. It seems like that could be a trigger too.

 

 

 

 

 

Thanks again everyone for your help! I'll keep you posted on how things are going.

Have you checked to see by blood test if you have any allergies? Like milk egg dairy etc? I found all that out after I was diagnosed with celiac. I want to try and stop my Prilosec but am nervous I will have acid reflux!! Mine was horrible and it's only been 3 months since diagnose