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Darn210

Acid Reflux Still A Problem

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Have you considered an elimination diet? Dairy, soy, corn or other foods could be causing these problems now that the gluten has been removed from her diet.

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I was wondering about other food intolerances, especially dairy, mercury toxicity (either from vaccines or dental amalgams if she has any), fluoride poisoning (I am woefully ignorant about this, but understand that fluoride is a potentially huge problem, especially in formula-fed babies, whose formula was mixed with fluoridated tap water), and Lyme disease (there are two threads on this board alone filled with celiacs/gluten intolerants whose problems with gluten were actually caused by Lyme disease).

I agree with nmw, that an elimination diet is the place to start, and then, if necessary, you can research other possibilities.

I hope the situation improves quickly!

My youngest had reflux, and we did the feeding half as much twice as often thing, which helped enormously. But hers presented when she was an infant. However, I don't think she was born with it. She had a virus with a high fever as a 1-month-old, was admitted to the hospital, and treated with strong IV antibiotics in case it was meningitis (it wasn't). Her reflux started within 12 hours of the hospitalization, and lasted for a couple of years.

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The allergist was extremely remiss in not testing for food allergies. WTH did he think the GI wanted him to do when he referred you to him? You weren't there because your poor baby is sneezing her head off! The sad truth about allergists/immunologists is that a lot of them consider themselves asthma specialists, and if you don't have asthma, they don't want to deal with you. I have run into this repeatedly with my severe allergies and sinus issues because I absolutely don't have asthma.

I would tell the GI that the allergist did not test for any foods at all, and ask for a referral to another allergist for a second opinion, or for him to speak to this one about the food allergy testing. They can and do talk to each other, and it can help you get results. My one very good allergist years back convinced my ENT to do an additional procedure during my sinus surgery based on all his experience and exams with me, even though the CT at the time didn't indicate it. And it turned out my allergist was right.

An elimination diet isn't a bad idea, but before going to the trouble, I'd try to get the testing completed first. And ideally, it would help to do the elimination diet with a doctor who is actively working with you to figure it out.


Celiac blood testing negative July 2007

Confirmed diagnosis of wheat allergy by skin test Dec 2007

Gluten-lite since July 2007 (didn't know all the hidden sources of gluten)

Gluten-free since December 2007

Life Long Symptoms

Extreme fatigue--needing 10-12 hours of sleep and still woke up exhusted

Allergic to everything--allergies remained out of control despite shots and strict enviornmental controls in my home.

Severe "sinus" headaches

More Recent Symptoms

IBS symptoms

Severe stabbing stomach pains that started 6 months before diagnosis of wheat allergy.

In my heart I feel it is more than an allergy and that I am gluten intolerant. This is based on my how eerily my childhood maladies match most celiac's histories, and my more recent increase in the severity of my usual symptoms and new digestive symptoms that have already started to subside on the gluten-free diet.

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Also, has anyone tried your daughter on a H-2 blocker like Zantac, rather than a PPI like prevacid? If a true food allergy is involved, an antihistamine and/or a H-2 (histamine type 2) blocker would help her more than a PPI because it would reduce the histamine response that is happening. Besides giving us a stuffy nose, histamine (specifically histamine type-2) regulates stomach acid production, which is why H-2 blockers are effective against reflux.

Have you ever at any point had to give your daughter Benedryl and noticed any difference in her reflux symptoms?


Celiac blood testing negative July 2007

Confirmed diagnosis of wheat allergy by skin test Dec 2007

Gluten-lite since July 2007 (didn't know all the hidden sources of gluten)

Gluten-free since December 2007

Life Long Symptoms

Extreme fatigue--needing 10-12 hours of sleep and still woke up exhusted

Allergic to everything--allergies remained out of control despite shots and strict enviornmental controls in my home.

Severe "sinus" headaches

More Recent Symptoms

IBS symptoms

Severe stabbing stomach pains that started 6 months before diagnosis of wheat allergy.

In my heart I feel it is more than an allergy and that I am gluten intolerant. This is based on my how eerily my childhood maladies match most celiac's histories, and my more recent increase in the severity of my usual symptoms and new digestive symptoms that have already started to subside on the gluten-free diet.

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I had horrible reflux that started after I went gluten-free. I even had cardiac testing to make sure that my heart wasn't involved (thankfully, it wasn't)

I ended up at an allergist/immunologist who first did skin testing for allergies to foods. When those turned up negative, we did an elimination diet.

When I cut out legumes, my reflux (as well as my eczema) went away. The only time I get it now is at the end of a gluten reaction.

I'd try an elimination diet, and begin with the most obvious like soy, corn and dairy.


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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I will get severe reflux from many things, but eggs, tomatoes and legumes (besides gluten grains, of course) are especially bad.

It doesn't have to be an allergy. It can be an intolerance, which won't show up on allergy testing. Also, she may have delayed reactions (I do), which won't show up with any testing, and have to be figured out with an elimination diet.

All those pills are masking symptoms, which are caused by something. You are right about wanting to get to the bottom of it, so she can eliminate the food(s) that is causing the reflux, rather than taking all those medications.

Besides, the reflux will result in damage to the esophagus, which is dangerous.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Was she tested for the H. Pylori virus? And there is another one...darn I can't think of the name right now. Its a virus or fungus that lives in the stomach and or intestines after another flu virus has left the system. It can stay there for years and all it really causes is severe acid. Hum....can't think of the name.

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First of all . . . thanks to everyone for their replies.

Second . . . :( yeah, I thought the elimination diet would be brought up. . . specifically dairy. :(

The allergist was extremely remiss in not testing for food allergies. WTH did he think the GI wanted him to do when he referred you to him? You weren't there because your poor baby is sneezing her head off! The sad truth about allergists/immunologists is that a lot of them consider themselves asthma specialists, and if you don't have asthma, they don't want to deal with you. I have run into this repeatedly with my severe allergies and sinus issues because I absolutely don't have asthma.

I would tell the GI that the allergist did not test for any foods at all, and ask for a referral to another allergist for a second opinion, or for him to speak to this one about the food allergy testing. They can and do talk to each other, and it can help you get results. My one very good allergist years back convinced my ENT to do an additional procedure during my sinus surgery based on all his experience and exams with me, even though the CT at the time didn't indicate it. And it turned out my allergist was right.

An elimination diet isn't a bad idea, but before going to the trouble, I'd try to get the testing completed first. And ideally, it would help to do the elimination diet with a doctor who is actively working with you to figure it out.

We have an appointment with the GI (doc1) first week of February. (Ggggrrrrrr, Why does it always take so long to get in?) I've got a whole list of things to discuss. . . and the elimination diet is one of them. History tells me that he would be supportive of a diagnosis made from results of a diet change. How do you know what's working, the elimination diet or the mediciations? I asssume she has to be off of everything before we start this process.

Also, has anyone tried your daughter on a H-2 blocker like Zantac, rather than a PPI like prevacid? If a true food allergy is involved, an antihistamine and/or a H-2 (histamine type 2) blocker would help her more than a PPI because it would reduce the histamine response that is happening. Besides giving us a stuffy nose, histamine (specifically histamine type-2) regulates stomach acid production, which is why H-2 blockers are effective against reflux.

Have you ever at any point had to give your daughter Benedryl and noticed any difference in her reflux symptoms?

I don't recall giving my daughter benedryl - at least at a time when I would have noticed a difference. Thanks for bringing this up. This will be another topic of discussion w/doc.

And here is an interesting development. My daughter brought home a stomach virus that was flying through the school. Most kids missed about a day or day and a half of school. My daughter missed three. The third day that I kept her home was just spitting up - about every 20 minutes. I called the pediatrician (because I knew I could get through to her and get a response quickly). I had been told previously that she could be on a higher dose of Prevacid. I told the pediatrician that I had to keep her home from school for what I thought was acid reflux and could we temporarily up her dose. Which is what we did. I don't know if it was just lucky on the timing or if it really kicked in, but the reflux/spit up stopped after starting the double dose. And she has not spit up since (it has been about a week). Now I'm thinking, that she probably doesn't need the erythromycin for the gastroparesis. I'm trying to recall but I think in the last couple of months, she has NOT been spitting up food but only fluid (saliva/phlegm/acid/?). Something else to talk with the doc about but I don't want to wait until Feb. I want to be on as little meds as possible. Unfortunately, he's hard to talk to in-between appts. You talk to the nurse, she talks to him, she calls back, you ask follow-up questions . . . and it starts all over again and it my take a day or three for every cycle of questions. Once again . . . .Ggggrrrrrr!


Janet

Experience is what you get when you didn't get what you wanted.

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I wish you the best of luck. I would do really well for several months whenever my prevacid dosage was increased, and then my symptoms would break through. I wish I had some good advice, but Im at as much of a loss as you are. In my experiance, I have had great docs, but after they check all the usual stuff, they just throw their hands up in the air. Since I am in the same boat, if you find out anything, I would love it if you could pass along the information. Once again, good luck and have a great holiday!

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First of all . . . thanks to everyone for their replies.

Second . . . :( yeah, I thought the elimination diet would be brought up. . . specifically dairy. :(

We have an appointment with the GI (doc1) first week of February. (Ggggrrrrrr, Why does it always take so long to get in?) I've got a whole list of things to discuss. . . and the elimination diet is one of them. History tells me that he would be supportive of a diagnosis made from results of a diet change. How do you know what's working, the elimination diet or the mediciations? I asssume she has to be off of everything before we start this process.

I don't recall giving my daughter benedryl - at least at a time when I would have noticed a difference. Thanks for bringing this up. This will be another topic of discussion w/doc.

And here is an interesting development. My daughter brought home a stomach virus that was flying through the school. Most kids missed about a day or day and a half of school. My daughter missed three. The third day that I kept her home was just spitting up - about every 20 minutes. I called the pediatrician (because I knew I could get through to her and get a response quickly). I had been told previously that she could be on a higher dose of Prevacid. I told the pediatrician that I had to keep her home from school for what I thought was acid reflux and could we temporarily up her dose. Which is what we did. I don't know if it was just lucky on the timing or if it really kicked in, but the reflux/spit up stopped after starting the double dose. And she has not spit up since (it has been about a week). Now I'm thinking, that she probably doesn't need the erythromycin for the gastroparesis. I'm trying to recall but I think in the last couple of months, she has NOT been spitting up food but only fluid (saliva/phlegm/acid/?). Something else to talk with the doc about but I don't want to wait until Feb. I want to be on as little meds as possible. Unfortunately, he's hard to talk to in-between appts. You talk to the nurse, she talks to him, she calls back, you ask follow-up questions . . . and it starts all over again and it my take a day or three for every cycle of questions. Once again . . . .Ggggrrrrrr!

I have 4 sisters and out of 5 of use there are 2 with celiac and our children has it as well.

When I read this I thought about the fact that my sister (who does not have celiac) has a son who is has all the same things. But if he does not have his Prevacid for 1 day he ends up in the hospital with 106 temp and blisters of the mouth from the acid. He has only been tested for crons but it came up inconclusive and now she is looking into celiac and Addison

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