This is so Painful!

[clayoub]

I haven't written in a while, but I always watch what's going on here. My reflux was pretty well controlled for about a year with just a daily 30mg tablet of Prevacid. For the past 3 months, or so, I have been in a great deal of pain again. I'm taking everything I am prescribed including 30mg of Prevacid twice a day and then either pepcid or zantac at bedtime. It seems like when I try to lose weight or diet, it makes things worse! I just don't get it. I'm not over weight, but I would like to lose about 5 pounds. When my stomach is empty, it is so very painful, and it makes it difficult to stay on a low calorie diet. I was trying low-calorie, low fat, but I just can't do it. I usually follow the Atkins diet, so I think I'll have to go back on it. Even so, I'm going back to my GI doc this month and ask, yet again, about other options. I'm so sad that I'm hurting like this again, but I guess that's the way it is with GERD. I'm so tempted to push getting a surgery even though I've been told my motility is not good. I still wonder if a hernia operation would help. Any thoughts on what do ask my doc? Is there anything else out there?

Thanks for listening!
Christine

[NYer]

Clayoub, Have you had an endoscopy? Have you been checked for an ulcer? Having so much pain on an empty stomach can sometimes be a symptom of an ulcer. Check with your GI doc.

[Thistle]

Sorry you're having problems, Christine. I'm with NYer -- see your GI doctor. Sometimes one brand of PPI stops being effective, and you have to change to another. If everything else checks out OK, you might want to switch.

[clayoub]

Thanks for the replies. I have an appnt with my GI doc on the 22nd of this month. I also went back on a very strict low carb diet and I'm starting to feel better already. I had an endoscopy recently. I think it was February of last year and I had Grade A Esophagitis and a small hiatal hernia. I don't know that they'll do another one so soon, but we'll see. I wonder if the hernia might be worse or if I'm just messing with my diet too much. I hadn't thought of ulcers. I'll have to look up more information on that. I don't know what else they would do since I'm already on so much medication. I think I should've been more careful with the holiday meals. I'll talk to the doc about the medications too.


Thanks! I'm just going to sit here with my heating pad and try to relax!

Christine

[Kevin]

The fact that you get relief from the low-carb diet is very intriguing. As you may have seen, I'm very interested in food allergy as a cause of ppi-refractory GERD. Do you drop milk or wheat while on the diet? Eggs? Do you have pollen allergies (especially birch--but many people with food allergies do not have airborne allergies).

Hang in there!

Thanks for the replies. I have an appnt with my GI doc on the 22nd of this month. I also went back on a very strict low carb diet and I'm starting to feel better already. I had an endoscopy recently. I think it was February of last year and I had Grade A Esophagitis and a small hiatal hernia. I don't know that they'll do another one so soon, but we'll see. I wonder if the hernia might be worse or if I'm just messing with my diet too much. I hadn't thought of ulcers. I'll have to look up more information on that. I don't know what else they would do since I'm already on so much medication. I think I should've been more careful with the holiday meals. I'll talk to the doc about the medications too.


Thanks! I'm just going to sit here with my heating pad and try to relax!

Christine

[clayoub]

Kevin,

I've been tested for lactose allergy and I'm definitely allergic to that. When I crave milk, I may drink some almond milk. Otherwise, I stay away from that. I do well with eggs but I don't eat breads. If I want somthing, I'll have low carb tortillas, but that's maybe once or twice a month. Today, I craved some pancakes, so I used the Atkins mix and then some sugarless/low calorie syrup. I made a small serving and that went well. I eat salads and some cooked or canned vegetables with dinner. Today, I'm feeling significantly better and was able to exercise without any discomfort. I'll still see my GI doc and stay on all of the meds, so we'll see how it goes.

How are you feeling and do you have food allergies?

Christine

[NYer]

Christine,
If you haven't already, get tested for celiac sprue. With your reaction to bread, it's quite possible you're celiac and it would explain your symptoms. Celiac is serious and if you have it, you have to go gluten free entirely. Get tested if you haven't yet.

[Kevin]

Very interesting. If you do in fact have one or more food allergies (and you can be allergic to wheat without it being celiac, although celiac is also possible), then that may be the problem.

I am doing fairly well. I find it difficult to avoid milk entirely, but my reaction to it is far less than that to eggs, which give me dysphagia. I am considering tapering my ppi usage, especially in light of the fact that I have an intact Nissen.

My allergies have been confirmed by skin testing and blood tests (RAST), but ultimately it's trial and error to find out what you can really tolerate. Legumes (soy and peanuts), tree nuts (almonds), milk, and eggs seem to be my big problems. It's frustrating to have multiple food sensitivities, and it would be a huge irony if ppis are in fact part of the problem, since an acidless stomach does not break down food proteins as well as a normal one, exposing the body to more allergenic material. Animal studies are suggestive on this front, but I'm sure that no conclusions will be reached any time soon.

Kevin,

I've been tested for lactose allergy and I'm definitely allergic to that. When I crave milk, I may drink some almond milk. Otherwise, I stay away from that. I do well with eggs but I don't eat breads. If I want somthing, I'll have low carb tortillas, but that's maybe once or twice a month. Today, I craved some pancakes, so I used the Atkins mix and then some sugarless/low calorie syrup. I made a small serving and that went well. I eat salads and some cooked or canned vegetables with dinner. Today, I'm feeling significantly better and was able to exercise without any discomfort. I'll still see my GI doc and stay on all of the meds, so we'll see how it goes.

How are you feeling and do you have food allergies?

Christine

[Thistle]

Gluten intolerance is definitely something you should check. It does all sorts of bad things to the GI system, and it could be part of the problem. It is not good to let it go, as it shortens life spans.

I'm gluten intolerant. A few years back I heard a doctor say that this is reaching epidemic proportions, because our diet of processed foods triggers it. At the time I thought this was probably a huge overstatement, but I keep running into people who tell me they've just been diagnosed with it, and stopping gluten has turned them around. So I believe this about processed food now. It is full of bad stuff.

You can still have reflux if you're gluten intolerant, of course, but you need to be sure what you're dealing with before you proceed.

[clayoub]

Gluten intolerance is definitely something you should check. It does all sorts of bad things to the GI system, and it could be part of the problem. It is not good to let it go, as it shortens life spans.

I'm gluten intolerant. A few years back I heard a doctor say that this is reaching epidemic proportions, because our diet of processed foods triggers it. At the time I thought this was probably a huge overstatement, but I keep running into people who tell me they've just been diagnosed with it, and stopping gluten has turned them around. So I believe this about processed food now. It is full of bad stuff.

You can still have reflux if you're gluten intolerant, of course, but you need to be sure what you're dealing with before you proceed.

I have been tested for Celiac's and that was negative, but if that's negative, is there another test for gluten intolerance? I hadn't considered it because I don't have Celiac's. In any case, I'm feeling better back on the low-carb, and breads/wheat are restricted anyway. The low-carb diet I'm on encourages use of soy or almond flours and I don't have issues with those. I think it's something I'll do more research on.

Thanks!
Christine

[NYer]

Christine,
There are a couple of different tests for Celiac Disease and it is very common to get a false negative. That's why it's so common for people with Celiac Disease to go for a long time without being diagnosed properly.

There are blood tests but it is also important to be tested during an endoscopy - they take tissue samples during the endoscopy and can diagnose from that.

I don't know what test you had done, but I strongly suggest you get tested again, perhaps by a different doctor.

If you do, indeed, test negative to Celiac Disease, yes, it's still possible to have a gluten sensitivity. The way to test for that is by doing an elimination diet.

This has been discussed in other threads but I'll copy some of that information here so that you know how to do an elimination diet:

A true elimination diet is done as follows:

Eliminate all of the potential "allergens" for 6 weeks. In your case, this would mean all foods that contain gluten. Gluten is found in ALL GRAINS - EXCEPT: Rice, Buckwheat, Corn, and Quinoa.

Then, after 6 weeks, add them back in one at a time. And the way to add them in is as follows:

After 6 weeks of not having it in your system, eat something with a lot of the particular grain in it with breakfast, i.e., if you start with wheat, eat Shredded Wheat cereal for breakfast. If you have no reaction, have another wheat product for lunch. Then do the same thing the following day. If at any point, you have a reaction, discontinue the food as you now know you are allergic or sensitive to it. If you do NOT have any reaction, after the two day test, skip one day, and then do it again for two days. In other words, do it Monday and Tuesday and then Thursday and Friday. If you make it to Friday without any reactions, then it's safe to go ahead and add that food back into your diet.

The following Monday, add in Oats, or Rye or one of the other grains, and follow the same process. It's time consuming but it's extremely accurate - far more so than scratch tests.

In your case, since you already noticed such a big improvement by cutting out wheat, you might not want to bother adding wheat back in, as you already know it'll be painful if you do. But you should try it with oats, rye, barley, etc. That way you'll know if your sensitivity is actually to gluten, which is in all of those, or simply just to wheat in general.

By the way, oats are not high in gluten, but they do contain it. And people who have Celiac should not eat oats. But if you're simply sensitive to gluten, they may or may not bother you and this is the only way to find out.

Celiac Disease is very serious and is much worse than a gluten sensitivity. So you really want to make sure it's ruled out.

A LOT of foods/beverages/sauces contain gluten and many that you wouldn't even guess. Here's a link to a site that lists a ton of foods you have to avoid:
[url]http://www.celiac.com/articles/182/1/Unsafe-Gluten-Free-Food-List-Unsafe-Ingredients/Page1.html[/url]

Good luck to you. And glad you're feeling better.
-NYer

[clayoub]

NYer,

Thanks so much for the info and support. I'll need to read it over again and decide how I'm going to approach this. I will talk to my GI about it too when I see him this month. I'm pretty sure he tested me when he did an endoscopy 3 years ago; the one I had last year did not include any biopsies. This was done for a clinical trial. Anyway, I like the idea of trying food elimination; I'm basically doing it anyway, right now. I'm so relieved that I'm seeing some improvement; it was a bit scary.

Take care,
Christine

[Thistle]

One more factoid about gluten-free eating: Read food labels. A lot of time something is called gluten free, but the label discloses that ingredients were processed on machines using wheat. So the item is not exactly gluten free. (Yet another reason to avoid processed food, of course!)

[NYer]

Thistle and I not only always think alike but we're also both very good looking.

[clayoub]

Thistle and I not only always think alike but we're also both very good looking.

That's what counts most, right?