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Just Trying Gluten-Free Way


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#1 corky21

 
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Posted 17 January 2012 - 10:20 AM

Hello,

I was not diagnosed with celiac. I was blood tested two years ago and it was negative. I don't have diarrhea or BM problems, in fact, very normal and regular, better than when I was younger. I do have hiatus hernia and stage II esophagitis. I've tried numerous remedies, all failed. I've been on PPI medicines for over 15 years.

I decided to try GL to see if that is what is causing my continous acid reflux when I don't take a PPI pill.

It's now 7 days of no Gluten, I have all GL products in the home, and yet I continue to get acid reflux.

I've read that most people with gluten intolerance have lower abdominal problems, but I don't have that. I have no skin issues, or other problems other than I have Hashimoto's disease and take natural thyroid hormone.

I will keep at this for a few more weeks, but how long before I'll know if going gluten-free is not helping?
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#2 Takala

 
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Posted 17 January 2012 - 11:30 AM

Is your thyroid supplement gluten free ? Everything needs to be, for this to work.
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#3 vb10

 
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Posted 17 January 2012 - 11:36 AM

Hello,

I was not diagnosed with celiac. I was blood tested two years ago and it was negative. I don't have diarrhea or BM problems, in fact, very normal and regular, better than when I was younger. I do have hiatus hernia and stage II esophagitis. I've tried numerous remedies, all failed. I've been on PPI medicines for over 15 years.

I decided to try GL to see if that is what is causing my continous acid reflux when I don't take a PPI pill.

It's now 7 days of no Gluten, I have all GL products in the home, and yet I continue to get acid reflux.

I've read that most people with gluten intolerance have lower abdominal problems, but I don't have that. I have no skin issues, or other problems other than I have Hashimoto's disease and take natural thyroid hormone.

I will keep at this for a few more weeks, but how long before I'll know if going gluten-free is not helping?


Everybody has different symptoms. Some people don't even have the symptoms while being gluten intolerant.

Do you want to know what my symptoms are? I am very very tired all the time. Like totally exhausted. Palpitations at night. Restless sleep. Night sweats. Heartburn. Hair loss. Fragile nails.

That's what I had. Nobody in the million years could have guessed I am gluten intolerant. If I were you, I would also stop eating any spices, grains and legumes. That will give you a better picture of whether you are gluten intolerant or not.
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#4 corky21

 
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Posted 17 January 2012 - 11:41 AM

Everybody has different symptoms. Some people don't even have the symptoms while being gluten intolerant.

Do you want to know what my symptoms are? I am very very tired all the time. Like totally exhausted. Palpitations at night. Restless sleep. Night sweats. Heartburn. Hair loss. Fragile nails.

That's what I had. Nobody in the million years could have guessed I am gluten intolerant. If I were you, I would also stop eating any spices, grains and legumes. That will give you a better picture of whether you are gluten intolerant or not.


I also had palpitations at times, but I chalked those up to menopause. I'm on bio estrogen and haven't had any palps for awhile. I also had restless sleep, but again, I think the bio estrogen and progesterone may be helping as well as some 5HTP. I also have had some hair loss and very thin nails, that for awhile had the oddest appearance. When i asked my doctors about my nails, they had nothing to offer. But now, again, while on thyroid hormone for awhile, they are still thin, but healthier.

I'll check the thyroid hormone, I didn't thing of that. I also take a lot of vitamins, so I should check those too I suppose.

As for spices, why those? And all grains, would that be rice too? I thought all the gluten-free products had rice, or quinoa, should I stay away from all that as well?

TY
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#5 ravenwoodglass

 
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Posted 17 January 2012 - 11:46 AM

Also be aware that going off of long term use of PPIs can cause a rebound effect. It may take a bit of time for that to resolve. When you say you are GL do you mean gluten light rather than gluten free? If we need to be gluten free we have to be gluten free completely for it to help.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#6 corky21

 
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Posted 18 January 2012 - 05:48 AM

Also be aware that going off of long term use of PPIs can cause a rebound effect. It may take a bit of time for that to resolve. When you say you are GL do you mean gluten light rather than gluten free? If we need to be gluten free we have to be gluten free completely for it to help.


Sorry meant gluten-free. I;m going to try it for a month or so. I think i would notice by then if my burning goes, so far it's been 8 days, no gluten, and i am still with acid reflux, but i do have hiatus hernia and some some esophagitis, so not sure if it's just that and not gluten, but i'm going to give it a few weeks.
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#7 corky21

 
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Posted 18 January 2012 - 10:35 AM

I was taking vitamins for nails and hair. It stopped the hair loss, but my vitamins were just masking the symptoms. My palpitations and night sweats went away after the first month on the Paleo diet (no gluten and no grains).

Rice does not have gluten, you are correct. However, there is a thing called cross-reactivity. Do you know why most gluten sensitive people develop lactose intolerance after going gluten-free? Because lactose has a structure similar to gluten and the body thinks it is gluten and attacks it as such.

So I would eliminate all grains and potatoes, because the structure is similar to make sure you do not have cross-reactivity. After a week on this diet you will either feel the difference or not. If you do not feel it, go back to gluten free grains, legumes and everything else. If you feel the difference, I would suggest to stay on this diet. It will help you to answer the question - how long before you know it. Also, just so you know, most shampoos, soaps and make up have gluten. Make sure to use gluten-free while you are trying to figure out what you have.

I found that many different spices and even table salt have additives to prevent clumping. They don't even list them on the ingredients!

Oh, and Hashimoto is closely related to gluten - most autoimmune diseases go together.

Good luck! By the way, you sound gluten intolerant to me!!! :rolleyes:


ouch, potatoes, rice? those are my favs, that I thought were gluten free. I don't know if i can eliminate those as well, but I'll give it a week. I didn't know makeup and shampoos could effect as well. I was also thinking of stopping my supplements for a few days too. I have osteopenia and take cal/mag/D/K, and also HTP for sleep and mood, multi, and some joint support, maybe the vitamins are an irritant? Then again, I hate to stop more than one thing, b/c then I won't know, right? So maybe just the gluten for a few weeks, and if no change, then I'll stop the supplements, and then if no change, maybe I need to stop my bio HRT, then if no change, maybe i have to raise my thyroid dose? It can be many things, or just my hiatus hernia and esophagitis alone.

THank you for the kind advice. Today I bought some more gluten-free products, some cookies were very good, and right now I'm having a chicken sandwich on corn tortilla instead of my favorite rosemary and wheat wrap. :P

So far it's about 10 days, and it hasn't been too difficult, but i'm sort of just eating the same things until i know for sure if it's Gluten. I still have the stomach issue, but as of 1:30 today, after some yogurt and gluten-free cereal topping, and no vitamins, no burning yet.
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#8 IrishHeart

 
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Posted 18 January 2012 - 10:52 AM

ouch, potatoes, rice? those are my favs, that I thought were gluten free.



They are gluten-free, hon. :)

Give yourself some time. Healing does not always happen within a week or so.

Best wishes, IH
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#9 Darn210

 
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Posted 18 January 2012 - 11:30 AM

Corky,

Rice and Potatos are fine.

A gluten free diet is not the same as the Paleo diet. If you want to try gluten free, then try gluten free. If you want to try Paleo, then I suggest researching it first and deciding if it has any benifits for you. You don't have to take the suggestions of someone (including me) off of a forum such as this.

Now, if you want to try gluten free, then you need to make sure everything that you are ingesting is gluten free. . . including meds/supplements as you have been made aware.

AS far as shampoo & soap goes, you'll see different opinions on this board. If you do a good job of not getting soap or shampoo in your mouth when you shower, you don't need for them to be gluten free. I stock gluten free at my house just because I have no idea what my daughter is doing in the tub for so long . . . she could be swimming, snorkeling, scuba diving and chances are, she's swallowing some soapy water.

Makeup? You should make sure your lipstick/gloss is gluten free.

Also, I don't know that most products have gluten in them, you just have to be aware of which products do and which products don't. We use Dove or Suave or Garnier Fructis in this house.
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Janet

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


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#10 Darn210

 
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Posted 18 January 2012 - 11:35 AM

I've been on PPI medicines for over 15 years.



Also be aware that going off of long term use of PPIs can cause a rebound effect. It may take a bit of time for that to resolve. When you say you are GL do you mean gluten light rather than gluten free? If we need to be gluten free we have to be gluten free completely for it to help.



Ravenwoodglass makes a good point. Did you stop your PPI meds cold turkey? I don't know what is the right way to do this. Maybe someone with experience with PPI's could chime in. Would cutting the dose in half and tapering off be better?
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Janet

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


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#11 IrishHeart

 
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Posted 18 January 2012 - 11:36 AM

As for spices, why those? And all grains, would that be rice too? I thought all the gluten-free products had rice, or quinoa, should I stay away from all that as well?



Spices --McCormick's are gluten free---just READ the labels.

And quinoa is gluten-free, too.
  • 2

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#12 Roda

 
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Posted 18 January 2012 - 11:38 AM

I wouldn't be to discouraged about the reflux not resolving just yet. You have been on PPI's for a very long time. Did you taper off of them or cut them out cold turkey? Tapering is better so you don't get the rebound effect that raven was talking about. Some people have to continue to take them until they heal after going gluten free. Eventally a lot of people are able to discontinue them after some time.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#13 Celtic Queen

 
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Posted 18 January 2012 - 11:47 AM

I have osteopenia and take cal/mag/D/K, and also HTP for sleep and mood, multi, and some joint support, maybe the vitamins are an irritant?


Don't forget to make sure your supplements are gluten free.
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Blood tested 8-11 positive, Biopsy 9-11 negative (long story, most gastro drs. are morons)

gluten-free 7-11, Dairy Free (mostly) 8-13 - Everything but butter.  Can't live life without butter....
 

DS - negative blood test, just diagnosed with ADD and other learning disorders, DNA test positive - high risk

Issues related to gluten: depression, low iron, hair loss, positive ana test for lupus, low vitamin D, headache, sinusitis, environmental allergies, brain fog, GI problems, weight gain....the list goes on....


#14 IrishHeart

 
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Posted 18 January 2012 - 11:52 AM

I wouldn't be to discouraged about the reflux not resolving just yet. You have been on PPI's for a very long time. .. Eventally a lot of people are able to discontinue them after some time.


I agree. This was my experience. It just took time, but now, I have no need for them--or for any GI-distress type med/supplements--at all.

My Mom --same experience. :)
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#15 corky21

 
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Posted 18 January 2012 - 12:02 PM

Ravenwoodglass makes a good point. Did you stop your PPI meds cold turkey? I don't know what is the right way to do this. Maybe someone with experience with PPI's could chime in. Would cutting the dose in half and tapering off be better?


no last year my doctor said to take one every two days, then if no burning, every 3 or 4 days, i could never get past 2 or 3 days and i'd have to take a pill. now i'm taking pepcid's as needed, sometimes it's every day.

i suppose i will have to return to the gastro md and tell him.
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