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What To Expect After Gluten Free Diet


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21 replies to this topic

#1 undiagnosedillness

 
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Posted 22 September 2010 - 08:45 PM

I'm not a confirmed Celiac patient (long long story) but I have just started the gluten free diet last week.

I'm wondering from those of you who have been diagnosed and are now on a gluten free diet what can I expect ?? If you can remember your first few weeks gluten free ? Did you experience any drastic changes ?

Thanks in advanced :)

Samantha
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Undiagnosed 6 years now, please god make me healthy again.

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#2 hh73

 
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Posted 23 September 2010 - 08:21 AM

I strongly advise against starting a gluten free diet if you are not diagnosed as a celiac disease patient by a licensed doctor. By starting the diet, you are making it incredibly hard for a doctor to diagnose you. They will have to do it backwards, which is much less reliable. What that means is they will have to give you something with gluten in it, and wait for a reaction to occur to see if you are gluten-sensitive. This test method is not nearly as reliable as the usual methods (biopsies and blood tests).


I have been on the gluten free diet for 6 weeks now. No improvement. I am an official Celiac patient. I am told by my doctor, my dietician, and by other celiacs that i should not expect results for at least 1 year (I am at the Marsh III level of villous atrophy in my small intestine).
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#3 Gemini

 
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Posted 23 September 2010 - 10:50 AM

I'm not a confirmed Celiac patient (long long story) but I have just started the gluten free diet last week.

I'm wondering from those of you who have been diagnosed and are now on a gluten free diet what can I expect ?? If you can remember your first few weeks gluten free ? Did you experience any drastic changes ?

Thanks in advanced :)

Samantha



I am a diagnosed Celiac, through blood work, and I had phenomenal results in just 3 days. I was extremely sick at time of diagnosis and down to 97 pounds, with a 1 pound per day weight loss going on. I couldn't eat much at all and was tied to the bathroom....could not leave the house. After I had my blood work done, I could not wait any longer to start the diet. A couple of more pounds of weight loss and I was destined for the hospital, which I wanted to avoid.

In just 3 short days of eating strictly gluten-free, the horrible diarrhea stopped and things started to return to normal. I took no meds for anything, just followed a gluten-free diet. The vomiting stopped, the nausea started to subside and I could finally hold down a meal. However, all the other symptoms I had, of which I pretty much had every one listed for celiac disease, plus the anemia and vitamin deficiencies, took up to 3 years to normalize. My acute symptoms got better immediately but my long standing, chronic ones took that long. Today I am healthy, have gained 15 pounds and my blood work is awesome. Everyone is different but most people who get to a serious degree of this illness should notice some improvement in a short time span.

It is entirely up to you whether you go gluten-free before a diagnosis or not. People are different and some can stick to this lifestyle with no problems and without a doctors blessing. I refused the endo because I was so sick at the time, the thought of having a tube shoved down my throat was none too appealing. Plus, I was BS at the medical profession for failing to diagnose me, even though I was a textbook case of Celiac. I am pretty sure I was at total villous atrophy, due to my symptoms and staggering, daily weight loss. When my blood work came back, 3 days after I started the diet, I failed all tests by huge numbers. Not everyone is lucky enough to show positive on a blood test or biopsy yet still have a problem with gluten. If you do a dietary trial and get positive results, that is as good as any test a doctor will do. Good luck to you and I hope you get some answers!
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#4 undiagnosedillness

 
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Posted 23 September 2010 - 08:42 PM

Thanks for the info :)
Long story to much to go indepth with here regarding my health :( gluten free is something I'd like to do for my health to see if any benefit, there's no harm in trying :) I'd do anything at this point to inprove my health
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Undiagnosed 6 years now, please god make me healthy again.

#5 SaraKat

 
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Posted 24 September 2010 - 06:06 AM

I am a newly diagnosed celiac. I didn't have the classic symptoms- I had a pain in my left lower ribcage area since Oct 2009 and found out through a rheumatologist (then a GI Dr for the biopsy) I had celiac. My GI Dr doesn't think the rib pain is connected to my celiac, but I have been on the diet since 9/1 and while I still have the rib pain a little, it is SOOOO much better than it was 2-3 months ago.
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Endoscopy confirmed 8/31/10
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#6 sahm-i-am

 
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Posted 24 September 2010 - 08:34 AM

I'm not a confirmed Celiac patient (long long story) but I have just started the gluten free diet last week.

I'm wondering from those of you who have been diagnosed and are now on a gluten free diet what can I expect ?? If you can remember your first few weeks gluten free ? Did you experience any drastic changes ?

Thanks in advanced :)

Samantha


Samantha - you don't have to be diagnosed with Celiac Disease to have reactions to gluten. And while relief times vary from person to person, dedication and time will tell in your case. I hope you start to feel better soon.


I strongly advise against starting a gluten free diet if you are not diagnosed as a celiac disease patient by a licensed doctor. By starting the diet, you are making it incredibly hard for a doctor to diagnose you. They will have to do it backwards, which is much less reliable. What that means is they will have to give you something with gluten in it, and wait for a reaction to occur to see if you are gluten-sensitive. This test method is not nearly as reliable as the usual methods (biopsies and blood tests).


I have been on the gluten free diet for 6 weeks now. No improvement. I am an official Celiac patient. I am told by my doctor, my dietician, and by other celiacs that i should not expect results for at least 1 year (I am at the Marsh III level of villous atrophy in my small intestine).



My 11 yr. old daughter had negative bloodwork but was positive for a gene for celiac disease. By her choice she went gluten free 4 months ago and has felt so much better. She accidentally ate gluten last weekend and had a bad reaction, confirming that her body doesn't like gluten. So, you don't need a diagnosis as a Celiac to start a gluten free diet. The best diagnosis is being gluten free, seeing if your symptoms improve. That is the ultimate goal.
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Diagnosed with Lymphoma March 2010. After surgery doctors said "Oops!"
Diagnosed with Celiac Disease April 2010. After endoscopy doc said "Aren't you glad?"
Uhhh.....yeah!
DD #1 ('99) tested negative on bloodwork but positive on 2 genetic markers. Went gluten free in July 2010 and has been symptom-free ever since!
DD #2 ('98) tested negative and has no symptoms. Didn't fork out money for genetic testing. Will watch and test regularly.
Husband tested positive in July 2010 and has refused to go gluten free. Uh huh, that's gonna bite him in the a** one day! (Pun intended!)

#7 T.H.

 
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Posted 24 September 2010 - 10:26 PM

Wishing you good luck in finding a reason for your poor health!

The changes I experienced in the first few weeks were the following.
1. Unrelenting hunger that lasted about 2 months I know not everybody gets this.
2. Some undiagnosed food allergies started bothering me more, especially dairy, potatoes, coffee, and sugarcane. ( I was tested for allergies post-diagnosis, and I'd already dropped these foods because they made me sick, and then discovered that I was actually allergic to them)
3. Exhaustion for the first couple months as I healed, and then exhaustion went away and I felt like I had more energy than I've had in years.
4. mentally overwhelmed at first, and then again, about 2 months in, the depression I've had for over a decade disappeared. I had to make huge changes, lost lots of foods due to other food allergies, was having other trouble financially with the new diet, and at the same time, I was feeling calmer and more able to cope than ever. It was, honestly, one of the biggest surprises for me about this whole thing.
5. Joint pain, soft tissue problems (like carpal tunnel), back pain, and a few other random aches and pains just went away after a few weeks, slowly disappearing. They've reappeared when I get gluten or one of the foods I'm allergic to. It's wonderful to feel so much better now.
6. able to sleep better and feel more rested after a few weeks.
7. There was a growing sensitivity to gluten the longer I stayed away from it. I had not reaction that I could have determined at first, but now, it's glaringly obvious when I eat the stuff. Very unpleasant, but very motivating to stay away from the stuff. I understand that having an increase in your reaction is pretty normal if you have celiac disease.


I'm not a confirmed Celiac patient (long long story) but I have just started the gluten free diet last week.

I'm wondering from those of you who have been diagnosed and are now on a gluten free diet what can I expect ?? If you can remember your first few weeks gluten free ? Did you experience any drastic changes ?

Thanks in advanced :)

Samantha


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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#8 undiagnosedillness

 
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Posted 29 September 2010 - 04:02 PM

SaraKat my main pain area is my rib cage, mostly the left side but I feel like Im being squeezed to death, 6 years of mulitple exams/tests etc and Doctors can't work out why Im in so much pain, so hearing about your rib pain has given me some hope :D Im on week two although I've alot to learn about what I can eat (still eating lots of OAT products.

Thanks for the responses everyone it will help me a great deal :)
I've just been through my library of tests from the past 6 years and turns out I've never been tested for Celiac B) so I asked the Doctor yesterday (not normal GP I see just a one off visit) and she told me if I'd previously had a colonscopy and my bowel looked fine then I wouldn't have celiacs ? can they tell just from looking at the bowel ? not actually taking a swab ?



I am a newly diagnosed celiac. I didn't have the classic symptoms- I had a pain in my left lower ribcage area since Oct 2009 and found out through a rheumatologist (then a GI Dr for the biopsy) I had celiac. My GI Dr doesn't think the rib pain is connected to my celiac, but I have been on the diet since 9/1 and while I still have the rib pain a little, it is SOOOO much better than it was 2-3 months ago.


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Undiagnosed 6 years now, please god make me healthy again.

#9 mushroom

 
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Posted 29 September 2010 - 07:43 PM

I've just been through my library of tests from the past 6 years and turns out I've never been tested for Celiac B) so I asked the Doctor yesterday (not normal GP I see just a one off visit) and she told me if I'd previously had a colonscopy and my bowel looked fine then I wouldn't have celiacs ? can they tell just from looking at the bowel ? not actually taking a swab ?


That is so wrong :blink: No, they can tell nothing about celiac disease from looking at the bowel with a colonoscopy. They need to go in from the other end with an endoscope and look at your small intestine to find celiac disease. Sometimes it can be seen with the naked scope, but usually it requires viewing under a microscope, and they need to take multiple biopsy samples because the damage can be very patchy. I would advise you not to listen to this woman!
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#10 peterm5365

 
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Posted 30 September 2010 - 06:32 AM

SaraKat my main pain area is my rib cage, mostly the left side but I feel like Im being squeezed to death, 6 years of mulitple exams/tests etc and Doctors can't work out why Im in so much pain, so hearing about your rib pain has given me some hope :D Im on week two although I've alot to learn about what I can eat (still eating lots of OAT products.

Thanks for the responses everyone it will help me a great deal :)
I've just been through my library of tests from the past 6 years and turns out I've never been tested for Celiac B) so I asked the Doctor yesterday (not normal GP I see just a one off visit) and she told me if I'd previously had a colonscopy and my bowel looked fine then I wouldn't have celiacs ? can they tell just from looking at the bowel ? not actually taking a swab ?


I just had an endoscopy on the 17th. I won't know the results until Monday, but the doctor said that the villi were flattened in my small intestine and he "thinks it's celiac disease." My main symptom was pain at the bottom of my left ribcage and pain down my left side. Both seemed to have improved in the week and a half that I've been trying to avoid gluten. I also had acid reflux so that was the actual reason for the endoscopy, to check on Barret's Esophagus. I have also had some other GI symptoms, but they were mils enough that I really wasn't too concerned about them.
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#11 Reba32

 
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Posted 30 September 2010 - 07:37 AM

That is so wrong :blink: No, they can tell nothing about celiac disease from looking at the bowel with a colonoscopy. They need to go in from the other end with an endoscope and look at your small intestine to find celiac disease. Sometimes it can be seen with the naked scope, but usually it requires viewing under a microscope, and they need to take multiple biopsy samples because the damage can be very patchy. I would advise you not to listen to this woman!


Yeah, I'll second that! The colon is not the small intestine, and the small intestine is where Celiac damage is caused. I'd find a new doctor :P

When I went gluten free I noticed a difference pretty much immediately with no bloating when I ate, and the noxious gas went away after a day or 2. The constipation took a few days to clear of course, and a couple weeks longer for my bowel movements to be "regular".
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#12 SaraKat

 
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Posted 30 September 2010 - 08:29 AM

I was just reading back, I can't believe so many of us had the ribcage pain. Peterm- I had the left side pain too- kind of wrapping around the back. It was so unbearable right before the diagnosis, that is actually why I went to a rheumatologist. I had no idea they would find celiac though. I was dx'd with costochondritis for months.

It was so bad that I would have wear loose fitting pants/skirts when I was sitting at my desk at work or driving. I have not had to do that since I have been gluten-free.
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Positive TTG IGA blood test 8/13/10
Endoscopy confirmed 8/31/10
Started gluten-free diet 9/1/10

#13 SaraKat

 
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Posted 30 September 2010 - 08:34 AM

SaraKat my main pain area is my rib cage, mostly the left side but I feel like Im being squeezed to death, 6 years of mulitple exams/tests etc and Doctors can't work out why Im in so much pain, so hearing about your rib pain has given me some hope :D Im on week two although I've alot to learn about what I can eat (still eating lots of OAT products.

Thanks for the responses everyone it will help me a great deal :)
I've just been through my library of tests from the past 6 years and turns out I've never been tested for Celiac B) so I asked the Doctor yesterday (not normal GP I see just a one off visit) and she told me if I'd previously had a colonscopy and my bowel looked fine then I wouldn't have celiacs ? can they tell just from looking at the bowel ? not actually taking a swab ?


You would need to have an endoscopy, not a colonoscopy. Please let us know what they find out. Maybe start with the celiac blood panel? Mine was off the charts high. Yes, I had that terrible ribcage pain. It started about a year ago. The pain seems to be at the bottom of the left rib, and when the Dr pressed on it, it hurt. He told me it was the bone that was hurting and I have read that celiac can cause bone pain. So, I am not sure why he doesn't think it is connected. I guess b/c it's not the typical complaint. Good luck! I am not eating any oats.
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Positive TTG IGA blood test 8/13/10
Endoscopy confirmed 8/31/10
Started gluten-free diet 9/1/10

#14 undiagnosedillness

 
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Posted 03 October 2010 - 04:16 PM

Wow so many of you with rib pain, this is giving me some hope :)
I've had both the colonscopy and endoscope back in 2004, since then I've had a ton of tests and all Doctors tell me I need to learn to live with the pain it's simply a "Nerve Dysfunction" :angry:

After 2 weeks cutting back on Gluten I notice a difference when I eat, not that aweful pain after meals and definetly less inflammation and heat coming from the stomach/rib area so I might be onto something ?

This forum is so helpful :)
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Undiagnosed 6 years now, please god make me healthy again.

#15 deezer

 
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Posted 07 December 2010 - 08:36 PM

Wow so many of you with rib pain, this is giving me some hope :)
I've had both the colonscopy and endoscope back in 2004, since then I've had a ton of tests and all Doctors tell me I need to learn to live with the pain it's simply a "Nerve Dysfunction" :angry:

After 2 weeks cutting back on Gluten I notice a difference when I eat, not that aweful pain after meals and definetly less inflammation and heat coming from the stomach/rib area so I might be onto something ?

This forum is so helpful :)


How's the pain been?
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