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Partial Gluten Free Diet?


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#1 Forensicmom

 
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Posted 26 February 2009 - 07:15 AM

I'm n ot sure yet if this is my problem or not and I want to give the acid medicine a little more time to work before I start changing my diet 100%.

However, I did buy a few gluten free items, like spaghetti to try them out (taste wise). Can anyone tell me if reducing the amount of gluten but not going TOTALLY gluten free will make any difference?

Also, how would you know if it's gluten you're allergic to or just one particular thing, like wheat? Would a food allergy test work?
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#2 ravenwoodglass

 
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Posted 26 February 2009 - 07:33 AM

Have you had any celiac screening done? A full celiac panel should be your first step before making any dietary changes. If you go gluten light first it can increase your chances of a false negative and there is a high enough risk of that even on a full gluten diet.
If your problem is gluten being gluten light is not going to be effective in stopping damage. Gluten intoelrance is not an allergy it causes an autoimmune effect not a histamine reaction. People can have both though. Most allergists only work with true allergies but occasionally you can find one who will help with an elimination diet to try and pinpoint intolerances. If you are positive to gluten on the elimination diet the allergist would often then refer you to a GI doctor for confirmation.
If your acid issues are caused by gluten then eliminating the gluten will eliminate the need for any meds.
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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)

#3 tarnalberry

 
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Posted 26 February 2009 - 08:26 AM

it's like a regular light switch, not a dimmer switch. either you've turned the light switch on, and there's electricity flowing to the light bulb, so it's producing light (in this analogy, you've ingested gluten, and your immune system has something to react to, which means it will also attack your own body), or you've turned the light switch off, and there's no electricity flowing to the light bulb, so it's dark (you've not ingested any gluten, your body has nothing to react to, it does not attack your own body).

there's no dimmer switch for gluten in the body, at any sort of realistic, consumable level.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#4 sbj

 
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Posted 26 February 2009 - 08:40 AM

it's like a regular light switch, not a dimmer switch . . . there's no dimmer switch for gluten in the body, at any sort of realistic, consumable level.

Hi Forensicmom: I disagree with tarnalberry in one particular respect.

You ask if reducing the amount of gluten will make a difference. Well, that depends on a few things but mostly on what it is that you have. That is, do you have celiac disease, are you gluten intolerant, or do you have a wheat allergy. These are three different things.

There's a Dr. Fasano who is a recognized expert in this field and here is what he has to say about your question:

"For all of them the basic [treatment] is a gluten-free diet. But the rules of engagement are different for where you are on the spectrum. That is why a proper diagnosis is extremely important. Celiac disease is an all-or-none proposition. If you go on a 99.9 percent gluten-free diet, that 0.1 percent is perceived by the immune system as something dangerous there. It can't distinguish between a crumb and an entire bread loaf. It's a different story with gluten sensitivity and allergy. Some people can't tolerate a crumb, and others have a threshold that is such that you can tolerate a piece of pizza."

It's very important to know whether you are celiac or not ... If you are gluten intolerant there are some who feel better on a reduced gluten diet. If you have celiac disease then you'd better not ingest even a crumb. Your sirst step should be to get the proper testing done before changing your diet.

http://www.celiac.co...showtopic=54628
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#5 tarnalberry

 
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Posted 26 February 2009 - 09:03 AM

Hi Forensicmom: I disagree with tarnalberry in one particular respect.

You ask if reducing the amount of gluten will make a difference. Well, that depends on a few things but mostly on what it is that you have. That is, do you have celiac disease, are you gluten intolerant, or do you have a wheat allergy. These are three different things.

There's a Dr. Fasano who is a recognized expert in this field and here is what he has to say about your question:

"For all of them the basic [treatment] is a gluten-free diet. But the rules of engagement are different for where you are on the spectrum. That is why a proper diagnosis is extremely important. Celiac disease is an all-or-none proposition. If you go on a 99.9 percent gluten-free diet, that 0.1 percent is perceived by the immune system as something dangerous there. It can't distinguish between a crumb and an entire bread loaf. It's a different story with gluten sensitivity and allergy. Some people can't tolerate a crumb, and others have a threshold that is such that you can tolerate a piece of pizza."

It's very important to know whether you are celiac or not ... If you are gluten intolerant there are some who feel better on a reduced gluten diet. If you have celiac disease then you'd better not ingest even a crumb. Your sirst step should be to get the proper testing done before changing your diet.

http://www.celiac.co...showtopic=54628


You're right - I'm definitely making the assumption that it's not a wheat allergy. And I generally make the assumption that even the gluten intolerant should be completely gluten free. Why? Because our testing for celiac disease is far from perfect. So absolutely ruling it out is never guaranteed. I'd rather err on the side of caution and not go from "I think I'm gluten intolerant" to "Oh, yeah, I'm celiac". But that is, as you very rightly point out, just my own assumption/opinion.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#6 sbj

 
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Posted 26 February 2009 - 09:14 AM

You're right - I'm definitely making the assumption that it's not a wheat allergy. And I generally make the assumption that even the gluten intolerant should be completely gluten free. Why? Because our testing for celiac disease is far from perfect. So absolutely ruling it out is never guaranteed. I'd rather err on the side of caution and not go from "I think I'm gluten intolerant" to "Oh, yeah, I'm celiac". But that is, as you very rightly point out, just my own assumption/opinion.

I think I'm just backing up raven: Get yourself tested so that you know what you have. I know that idea - that you can get an accurate diagnosis - is controversial on this forum but I think it's possible. So we do disagree that it can be ruled out.

There are those who self-diagnose as gluten intolerant and then 'cheat' every once in a while. We agree that people should not do this. However, I am of the thinking that if you test negative by blood panel, negative by biopsy, and don't have the genetic predisposition, then it's possible that you could be gluten intolerant and ingest some gluten on occasion (as Dr. Fasano suggests) without harmful effects. That's also just an opinion - although we constantly read about people on this forum who feel tons better even though they sometimes mess up or cheat.

It would be a very, very bad idea to self-diagnosis as gluten intolerant and cheat if you, in fact, actually had celiac disease.
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#7 Forensicmom

 
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Posted 26 February 2009 - 10:40 AM

Thanks for the informantion.

I had a negative blood test and a negative biopsy, however I"m still having problems even after a few weeks of my 5th acid medicine. I noticed a few years ago when my DH was on the South Beach Diet (I wasn't on it but since I was cooking & preparing the food, I ate that way too) that my stomach felt great. We weren't eating any bread or carbs for a few weeks and thens low introduced whole wheats and others back in. I felt great for awhile and after a few months is when I really really started going downhilll with my stomach and other issues, which were just diagnosed as anemia. That's why I keep hearing that even though my tests were negative, it's still possible that I could have an intolerance or celiac's. I read that the only try way to diagnose is through a stool test by Enterolab. Next is to go on a totally Gluten free diet for at least a few months.

I'm trying to wait a few more weeks before I do anything, like more testing or a full diet. I was just trying some of the foods to see how they tasted and how they made me feel. I figured it couldn't hurt to eat some gluten free things even if I don't have Celiac's, right?
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#8 Jestgar

 
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Posted 26 February 2009 - 10:48 AM

You may find that feeling well is such a pleasant experience that you have no interest in ever eating gluten again.
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#9 sbj

 
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Posted 26 February 2009 - 10:52 AM

I noticed a few years ago when my DH was on the South Beach Diet (I wasn't on it but since I was cooking & preparing the food, I ate that way too) that my stomach felt great. We weren't eating any bread or carbs for a few weeks and thens low introduced whole wheats and others back in. I felt great for awhile and after a few months is when I really really started going downhilll with my stomach and other issues, which were just diagnosed as anemia. That's why I keep hearing that even though my tests were negative, it's still possible that I could have an intolerance or celiac's. I read that the only try way to diagnose is through a stool test by Enterolab. Next is to go on a totally Gluten free diet for at least a few months. I'm trying to wait a few more weeks before I do anything, like more testing or a full diet. I was just trying some of the foods to see how they tasted and how they made me feel. I figured it couldn't hurt to eat some gluten free things even if I don't have Celiac's, right?

If you feel better when you don't eat gluten then I would say stop eating gluten! You may want to get the genetic test to further help with your diagnosis. I don't understand why stomach problems would be diagnosed as anemia? It's not likely that you have celiac disease but I won't say that you don't. It's possible that you are gluten intolerant but there is no recognized way to 'diagnose' gluten intolerance. Be advised that Enterolab doesn't diagnose anything at all. They test your poop and then many people are left wondering what the results mean and come here for help.

Again, if you have celiac disease then it is dangerous to eat gluten. Some gluten intolerant people can tolerate gluten in small amounts. There is no way to diagnose gluten intolerance. If you feel better when you don't eat gluten then stop eating it. I don't mean to be flip but it really is just that simple. :) Best of luck!

PS If you find any gluten free bread that tastes even marginally good please report back!
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#10 Forensicmom

 
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Posted 26 February 2009 - 01:06 PM

Thanks.

I was diagnosed with anemia after a few years of feeling exhausted, headaches, shakiness, shortness of breath & heart palpitations (sometimes), and I'm very cold all the time. On top of that I've dealt with nausea, stomachaches, gas & bloating.

My symptoms started 3 1/2 years ago and since I'm a 38 year old mom with 4 kids, the dr's automatically said it was stress and I was having panic attacks, even though I was certain I wasn't. Then they said maybe it was acid reflux but after a few months of nothing working and me feeling extremeley sick for several months, they suggested IBS. The tested my gallbladder which showed it was only work 16%, so they removed it. I had NO stones at all, they said it just stopped working. That didn't solve my problems either.

I do manage to be very active in my 4 children's lives and schools so this hasn't totally prevented me from enjoying my life but it sure makes it hard sometimes.

As far as the anemia goes, I thank my hubby. I've had extremeley heavy periods for over a year and he finally asked me if I was anemic since I was literally falling asleep at the dinner table every night. I saw my GP, who tested me and sure enough, my levels were all low (ferritin, hemoglobin and hematocrit). I've been taking iron supplements, along with digestive enzymes and acidophilis since the iron will tear my already bad stomach up even more. I can feel the iron working b/c I have more energy and I'm no as cold as I was before. My hands still shake occasionally but I hope it gets better.

I'm still confused a little bit about gluten. I have no idea whether gluten or wheat or what, if anything, is a problem for me. Both the blood test and biopsy were negative but I've been told that those have false positives all the time, so what other tests are there that are accurate? How do they determine whether gluten, or just plain wheat, etc are the problem?
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#11 sbj

 
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Posted 26 February 2009 - 02:17 PM

I'm still confused a little bit about gluten. I have no idea whether gluten or wheat or what, if anything, is a problem for me. Both the blood test and biopsy were negative but I've been told that those have false positives all the time, so what other tests are there that are accurate? How do they determine whether gluten, or just plain wheat, etc are the problem?

I'm going to have to let someone else chime in here because a whole slew of people disagree with me about this. You can diagnose celiac disease via the celiac blood panel and the endoscopic biopsies; you can confirm the diagnosis by a positive response to the diet; you can support the diagnosis by genetic testing. Enterolab testing doesn't diagnose anything so I wouldn't bother. If you test negative via the celiac panel and negative via biopsy you are going to find it very difficult to get a celiac diagnosis from any medical practitioner. You can get allergy testing to determine if you are allergic to wheat. If you are gluten intolerant there is essentially no way to diagnose that condition - the means do not currently exist. At best, you can try the gluten-free diet and if there is a positive response you can assume that you are gluten intolerant.

What I am saying is that you've tried the appropriate testing (blood and endo) and they indicate you do not have celiac. A positive response to a gluten-free diet indicates you might be gluten intolerant. That might be as good as your diagnosis gets. I suggest you go back to your doctor and tell him you want some more definitive answers. At the very least he/she should continue to work with you until you feel some relief.

A little googling will probably help answer a lot of your questions - I wish you luck and health.
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#12 Forensicmom

 
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Posted 26 February 2009 - 02:47 PM

Thank you so much for such a clear cut answer. That's the one thing I was trying to figure out and you said it perfectly.

I am scheduled to see my doctor in a few weeks for a follow up and I at least want to know what to ask.

Thanks again.
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#13 Keri

 
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Posted 26 February 2009 - 07:03 PM

Some of your symptoms sound possibly like they are related to your thyroid, especially shakiness, feeling cold, heart palpitations... you could have your doctor test you for thyroid problems, although she may already have since it's pretty common especially with women. It is interesting to note also that there is a relationship between auto-immune thyroid problems, celiac disease and iron deficiency. You should ask your doctor for some more help with your symptoms... it does not sound like just stress.

This has been an interesting thread, thanks! The analogy of a light being on or off in regards to ingesting gluten is really helpful. I recently had positive blood work for celiac, but I don't have the obvious digestive distress that some have, so I never know if eating a little gluten even by accident is very harmful or not.
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#14 happygirl

 
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Posted 26 February 2009 - 07:19 PM

PS If you find any gluten free bread that tastes even marginally good please report back!


Gluten free pantry french bread or gluten free pantry sandwich bread. Use to make loaves, rolls, bread sticks...add cheese, or italian seasonings....
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#15 sbj

 
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Posted 27 February 2009 - 08:09 AM

Gluten free pantry french bread or gluten free pantry sandwich bread. Use to make loaves, rolls, bread sticks...add cheese, or italian seasonings....

Okay - I'm gonna take your word and shell out the money for the mix over at Sprouts! I'll be billing you if it ain't any good. :lol:
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