What To Expect After Gluten Free Diet

[undiagnosedillness]

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

[hh73]

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).

[Gemini]

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!

[undiagnosedillness]

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

[SaraKat]

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.

[sahm-i-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.

[T.H.]

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

[undiagnosedillness]

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 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 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.

[mushroom]

I've just been through my library of tests from the past 6 years and turns out I've never been tested for Celiac 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 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!

[peterm5365]

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 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 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.

[Reba32]

That is so wrong 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

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".

[SaraKat]

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.

[SaraKat]

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 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 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.

[undiagnosedillness]

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"

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

[deezer]

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"

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?

[FooGirlsMom]

Yep - intermittent rib cage pain was one of my last symptoms prior to going gluten-free in October. For the first time in 15 years I was eating gluten continually for 2 years and I got very sick. New symptoms were appearing monthly. The last 2 as I recall were the ribcage pain and tingling in my feet.

I hope you feel better soon.

FooGirlsMom

[SGWhiskers]

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 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 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 ?

A colonoscopy CANNOT diagnose celiac. A blood panel and or EGD biopsy (through your mouth, stomach and upper intestines with at least 6 samples) while you are consuming at least 2-4 slices of bread/day are the standard way of diagnosing celiac. If you are positive on any of the blood tests or the biopsy, then it's celiac. Additionally, there are plenty of people who find relief from their symptoms by going on a gluten free diet. These people are either not tested for celiac or considered gluten intolerant (which might be a form of celiac that does not show up on current medical tests). Sometimes physicians will make a diagnosis on dietary response alone. Either way, these people know they feel better off gluten and don't usually care about a formal diagnosis. If you want a formal diagnosis, it is easier and more accurate for you to get the blood work done today while there is gluten in your body than after you have started the healing process. Lab results will likely show a false negative if you are not consuming enough gluten. If you don't care about a formal diagnosis, then do like you are planning and start a strict 3 month trial of gluten free.

As far as what did my recovery look like?

I had primarily neurologic symptoms instead of GI symptoms. Initially, I didn't believe that MY body would need to be as strict about cross contamination as everyone on this forum said I would need to be. I was careful about my food, pans and utensils, but not about my grill, cutting board, and speciality cooking items. I ate out a little in the beginning but tried to explain things to the waiter rather ineptly. I didn't get how or why oats would make me sick at first.

With that said, I started to sleep less and have more energy around the 5 week mark. That meant I could walk to the end of the subdivision and back without having to stop for a break. My mood lightened I think as soon as I got the diagnosis and it was confirmed I was not a crazy hypochondriac. Around the 5-7 week mark, I had some set backs and started wondering about my cross contamination. Then I got crazy, paranoid strict and some serious recovery started. I ate literally non-stop from about 3 weeks into my diagnosis into 5 months. Then I could go with 3-4 meals and a hearty snack between each meal. I had some blood sugar/hydration problems around 2-5 weeks. I guess a lot of people get those. Eliminating sugars and simple carbs and switching to only water helped settle that down. I was able to return to work at about the 4 month mark, but I was terribly fatigued still and slept as soon as dinner was finished. Hubby helped out in the kitchen so much. I was able to have the energy to have one social event/week after about a year. I gained 20 lbs because my body was absorbing nutrients finally. Lots of people asked me if I had lost weight though. I think they saw me looking healthier. At the 18 month mark, I started naturally loosing that weight and stabilizing back to a weight that was normal for me. The skin pain that I had been experiencing lessened after about 2 weeks. Piercing eye pain got less frequent over 12 months. Sunlight sensitivity lessened over 2 years, but it is still there. over sensitive hearing started getting better after 2-3 weeks, but really took a year before it was normalish. I'm still hyper sensitive to smells. I can smell cigarette smoke from a car ahead of me traveling on the highway. I've thrown out all my candles, perfumes and soaps. Migraine intensity and frequency got better, but not by much. Well, I stopped the constant sensation of I'm about to get a migraine, and went to either having or not having one. I don't have constant visual auras. My blood pressure stayed really really low and I never got over the sensation that I would pass out. The best part was getting pregnant naturall after being told I would need an egg donor. That was 21 months after going gluten free and 4 years after being told I needed an egg donor, and 8 years after trying to start a family. My muscle pain stayed very intense until I started physical therapy at the 12 month mark. they taught me about trigger point release and I started an hour of intense self treatment nightly. I slowly improved, but was not at all normal when I got pregnant. When I got pregnant, all the hormones relaxed my muscles and I feel fantastic. Better than I have since I was 7. I'm dreading the thought of my body returning to tightness after I have the baby, but the docs don't seem to think it is worth worrying about. (They are not in my body though).

At the 26 month mark, I'm coming to terms with the reality that I'm probably going to have more fatigue and need to pace myself more than the average person. I'm off antidepressants for the first time in years. I'm frustrated with always having to cook, but am eating healthier than I ever did while on gluten. I have questions every day and am taking small steps to expand my social network that was damaged from years of skipping parties and cancelling plans because I felt bad.

Oh, I said I had neuro symptoms, I also didn't realize it, but I apparently had some GI symptoms that got much more comfortable after going gluten-free and realizing I was allergic to milk and eggs and intolerant of nuts.

When I get gluten, (which I still manage to do about every 3-10 weeks), I get all the neuro symptoms back, but fortunately not as strong as they once were. The gi symptoms start within a day and both symptoms peak from days 3-5. I start to be myself again after about 2 weeks and feel something close to healthy after 2 months.

I hope whether you take the path of testing then a gluten-free diet or move to a gluten-free diet immediately, you are strict about it and that you feel better soon.

[Tiferet]

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.

(snip)

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!

I didn't want to wait but I did wait until a week after they did the blood work. The blood work in my case was so high off the chart that they told me not to wait, just go on the diet. I was so relieved! It's only been a few days and I also feel incredibly better.

I wasn't as physically ill as you, from the sound of things, but I had terrible brain fog, fatigue, joint pains and occasional episodes of gluten ataxia. I thought I was totally losing it and would end up in a nursing home before I was 50. But my mind already feels clearer.

[domesticactivist]

For those of you with the rib pain, I hope you will get screened for cancer. I know this sounds weird but I lost a dear friend because her rib pain was misdiagnosed for well over a year. She was seeing a regular dr, physical therapists, pain specialists, etc and had been through breast cancer years before and still they missed it until she switched to kaiser due to her dh's job and they reviewed everything and ordered new bloodwork. Unfortunately by then it was too late to eradicate it. I'm not saying it's likely, but any mysterious chronic or severe pain should get thoroughly looked into.

[Happyw5]

I started my gluten free diet 10 days ago. My stomach looks flatter, I don't have to run to the bathroom 17 times a day. I just feel better! I still have a lot of belly rumbling, and I am still pretty tired. I had blood tests run days ago and still don't have the celiac results, however, I was positive to wheat allergy. I decided that no matter what the celiac tests said I had to stop eating wheat, so I decided just to go gluten free. I also had that left side rib pain and still do if I am riding in a car or trying to do situps! I still have some other issues, but I have other allergies that my allergist is looking into and will hopefully get my results soon. I actually feel gassier than I used to, I wonder why? I also have some thyroid issues that we have to start treating. All in all I know that gluten free works for me!!!

[Meatballman]

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 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 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 ?

rib pain was my main symptom.It took the doctors(many doctors)fours years to diagnose me.I had to literally beg to be tested.I am only four months gluten free but the rib pain seems to be improving.I think it my be time for you to find a new doctor.Good luck.

[Holly1137]

Just adding in that I had left rub pain for MONTHS. Diagnosed as acid reflux, stomach ulcers, and anxiety. Have been off gluten a month and only had the pain the time I was glutened =) it's nice to know that others had this, and I hope that being gluten free will help you! Good luck and keep us posted. =)