Does Anyone Feel Good

[ikayak]

Does anyone feel good after being gluten free?

I have been gluten-free for almost three years and still have a super sensitive digestive system and generally feel fatigued most of the time. Tired of feeling tired.

:'-(

[Jestgar]

It took a while, and I had to cut out a few more things, but yes, I feel awesome now!

[T.H.]

after going gluten free, I felt like crud.

I had to cut out some foods it turned out I'm allergic to - I don't get hives, but have fatigue and other issues. That helped. I had to lower my gluten intake to lower than the gluten free standard. that helped a lot.

A question for you - do you know if you are one of the 10-15% of celiacs who react to gluten-free oats? IF you are, a lot of gluten-free foods will be contaminated with gluten-free oats and will give you a mild gluten reaction, just like wheat would. That could explain not getting better, if you have no other intolerances or allergies.

[eatmeat4good]

Check your vitamin levels too....many vitamin deficiencies can make you feel fatigue and exhaustion.

Be sure to take a good gluten free supplement.

[GlutenFreeManna]

I felt pretty good within 6 months and great a year out (I'm 1 year, 2 months now). HOWEVER:

I had to remove dairy and soy.

I had to really get vigilant about taking my vitamins and supplements.

I had to be very strict about my diet and do mostly whole foods.

I rarely eat out, my entire household is gluten free and I try to only introduced one new processed food per month. That way I know for sure if I am reacting to the new food or if it's something else like the flu.

I had to get serious about eliminating cc sources. I've found I am very sensitive to cc--my husband has glutened me with a kiss after he ate gluten, I've also been glutened by sharing a water bottle with him when he had eaten gluten. I cannot safely eat any Bob's Red Mills products because I am sensitive to even gluten-free oats and they process gluten-free oats in their gluten-free facility.

I also am careful about non-food items such as shampoo and hand soap. I figure if it touches my hands, it could very easily enter my mouth.

I got rid of all my old scratched non-stick pans and bought some good quality stainless steel. I also got rid of old cutting boards and anythign wooden or otherwise pourous that could have hidden gluten contamination. I bought a new toaster too.

If you have done all of the above and you still feel sick, then you need to go back to your doctor and be tested for other things. Hypothyroidism or Hashimotos is a common cause of fatigue. Other autoimmune disorders are common too--lupus, RA, MS, etc.

[dilettantesteph]

It's been over three years. I feel great much of the time, but still bad sometimes. I stay away from processed foods., and a lot of other stuff too. I'm very sensitive. I started feeling much better right away and since then it has been a roller coaster of ups and downs while I have been figuring what I can eat, and what I can't. My life is series of elimination/challenge diets. As I become sensitive to lower levels of trace gluten I have to re-challenge things one by one and eliminate some of them.

[jeanne-]

I have more digestive problems now than I did before being gluten free.

[mushroom]

Does it feel great not to have to map out the location of every toilet along one's intended route of travel? You bet it does.

Does it feel great not to have such terrific bloating that one faints? You bet it does.

Does it feel great not to have stomach cramps and diarrhea? You bet it does.

Did I discover/develop other food intolerances along the way? I sure did.

Have you improved now you have found what these are? I sure have.

Does it feel great to still have psoriatic arthritis even though gluten free? Nope!

Does it feel great that I have finally found a medication to control them? You bet it does.

Does it feel great that I have to be conscious of everything I put in my mouth? Nope!

Is it worth it? You bet it is

[MsCurious]

Does anyone feel good after being gluten free?

I have been gluten-free for almost three years and still have a super sensitive digestive system and generally feel fatigued most of the time. Tired of feeling tired.

:'-(

I just found this little tidbit on another celiac site and thought it might be helpful to you. Maybe you could ask your doctor about it:

"The second thing I wanted to mention is that there is a condition called refractory sprue....this is very rare, fortunately! Refractory sprue is celiac disease that does NOT improve on a gluten free diet."

"Here is a quote from an article on refractory sprue:

"It is interesting to note that in a recent study of patients with "unresponsive" celiac disease, Dr. Joseph Murray and his colleagues (of Mayo Clinic, Rochester, MN) found that of 49 patients evaluated, only nine actually had refractory sprue

[dilettantesteph]

"It is interesting to note that in a recent study of patients with "unresponsive" celiac disease, Dr. Joseph Murray and his colleagues (of Mayo Clinic, Rochester, MN) found that of 49 patients evaluated, only nine actually had refractory sprue

[MsCurious]

I am interested in this topic. Can you give a link to the study?

I wish I could. I was on a forum site similar to this one... don't remember the name of it. I had googled something and just clicked the link so I didn't really pay much attention to the name of the site. Maybe it was Health.com? But I'm not certain. I didn't see the study... just the quotes from it that I posted.

Dr Joseph A Murray is a gastroenterologist at Mayo Clinic, Rochester, MN ... but he is also either the lead or one of the lead researchers there on Celiac. He's from Ireland, where they are much more advanced in the awareness of Celiac, as that is one of the hotspots for genetics linked to Celiac, from what I understand.

You could probably google: Dr Joseph A Murray Mayo Clinic refractory sprue. If you can't find it that way, you could probably call Mayo Info line and ask how you could get a copy or a link. Good luck... hope this helps you!

[jeanne-]

Found this on www.foodreactions.org. Hope it helps. Take care.

Coeliac disease comes in a variation of strengths, where some people are more severely affected than others. Presently the only treatment is a life-long gluten-free diet. In the vast majority of patients, a strict gluten-free diet will relieve the symptoms. A tiny minority of patients suffer from refractory sprue, which means they do not improve on a gluten-free diet. This may be because the disease has been present for so long that the intestines are no longer able to heal. In other patients, the intestinal damage of coeliac disease may have been aggravated by other problems, such as intolerance to the dietary proteins found in eggs, milk, or soy.

[Financialman]

In my first year of being gluten free I felt like hell. Tired, nausea the usual stuff. I got rid of the tired feeling by exercising more, taking supplements, and especially vitamin b-12, shots or drops. Once my gut and I adjusted to each other things have improved immensely. Check with your doctor and see what can be down. These things may not work for everyone but you won't know until you try.

[MsCurious]

In my first year of being gluten free I felt like hell. Tired, nausea the usual stuff. I got rid of the tired feeling by exercising more, taking supplements, and especially vitamin b-12, shots or drops. Once my gut and I adjusted to each other things have improved immensely. Check with your doctor and see what can be down. These things may not work for everyone but you won't know until you try.

Okay I had a little time this morning, so I searched around and found this article that may answer some questions for those of you who are on gluten free diets, but still don't feel well. This may help you understand why you might not feel well.

Histopathology. 2010 Nov 3. doi: 10.1111/j.1365-2559.2010.03680.x. [Epub ahead of print]

An update in the diagnosis of coeliac disease.

Walker MM, Murray JA.

Department of Histopathology, Imperial College London, St Mary's Hospital, London, UK Mayo Clinic, Rochester, MN, USA.

Abstract

Walker M M & Murray J A
(2010) Histopathology An update in the diagnosis of coeliac disease Coeliac disease is increasing in prevalence, which is currently estimated at one in 100 of the population and may occur de novo in adults. The diagnosis requires a joint clinicopathological approach; the recommended first-line test is serology with immunoglobulin A (IgA) tissue transglutaminase and IgA endomysial antibodies. These serological tests show high levels of sensitivity and specificity, but biopsy is the gold standard to confirm the diagnosis. It is important that both tests are performed before the introduction of a gluten-free diet. Although the classical histopathology changes of coeliac disease with partial or total villous atrophy are well recognized, the pathology classification of coeliac disease is changing, with recognition that coeliac disease may show minimal pathology (normal architecture and an intraepithelial lymphocyte count/100 enterocytes ≥ 25). This entity is also described as lymphocytic duodenosis, and recommendation of follow-up serology testing is paramount in this condition. Follow-up of patients with coeliac disease is warranted, as normal serology does not predict mucosal recovery. Failure to heal predicts risk of progression to refractory coeliac disease and malignancies. Refractory coeliac disease occurs in 1-2% of patients and this diagnosis requires a combined clinical and histopathology approach with immunocytochemistry.

[jeanne-]

Dr. Thomas O'Brayn was interviewed on Undergroung Wellness Radio by Sean Croxton on Jan. 10, 2011. Dr. O'Bryan's specialty is gluten sensitvity. In the interview, Dr. O'Bryan said that there are cross reactive foods. Our bodies by react to these foods as if they were gluten. One example he gave was coffee. If someone reacts to coffee, his body will feel glutened with each cup he drinks. Cyrex labs has a test to check for 24 different cross reactive foods.

www.undergroundwellness.com

www.thedr.com Dr. O'Bryan's website

www.cyrexlabs.com

[catarific]

Yesterday I went to the Gastroenterolist and spoke with the nutritionist there. I had told her I have so many sensitivities now - that I was not sure what to eat anymore. When she asked me what my reactions were to those foods - I told her most of the time cramping, bloatedness, diarrhea. Now she said something I totally would not expect and that is to keep trying to eat those foods (especially fresh fruits and vegetables, meat) even though the result might be cramps, etc. She said what is happening is that the body starts having bad reactions to food due to the act of simply avoiding them but that reintroducing them is very important because ultimately what may result is that the deprivation of needed foods will cause the body to not be able to fight off infection. Now I am not one who likes pain - and certainly not gastric issues but that was her advice - especially if you know from the doctor that nothing else is going on in conjunction with either the celiac or gluten sensitivity (no Crohns, IBD). She did say to avoid sugary food (deserts, candy, etc.) and bleached floor (white bread, pasta, rice). What she did indicate is that the more foods you continually have to avoid, the more foods you will end up avoiding. She said this is true with most types of gastro illnesses - that once going through it - many fear eating certain food again and deprive themselves of that which the body actually needs.

[mushroom]

Did she mention to be sure that you did not have a leaky gut, i.e., that all your intestinal lining was intact with "tight joints"? before you ate those foods again? Because if you have a leaky gut it is likely that you will continue reacting to those foods until you heal it.

[catarific]

Did she mention to be sure that you did not have a leaky gut, i.e., that all your intestinal lining was intact with "tight joints"? before you ate those foods again? Because if you have a leaky gut it is likely that you will continue reacting to those foods until you heal it.

What she did mention was that this applied after being cleared of any other type of gastrointestinal disorder which would include leaky gut. I know for myself, I have lost over 15 lbs - now putting me at 101 lbs all dressed with shoes. I have stopped eating vegetables and red meat. The only fruit I can abide by is a 1/2 banana daily. I live on baked fish and chicken and sometimes turkey - although turkey sometimes gives me problems. If I can handle these foods - could I still have leaky gut? Wouldn't leaky gut apply to all foods being ingested and not just certain ones? I have given up sweets and cereal - seems that cereal doesn't do good with me (the rice chex gluten free) all the time. On some days I can handle cereal - other days not (for whatever reason). But I do see what she is saying - that when you start having sensitivities and avoid them more seem to abound that weren't there before. Truthfully I have given up trying to understand why things happen and feel blessed when I have good days now!

[mushroom]

When you have a leaky gut the foods that seem to bother you the most are those that you eat a lot of, which is why it IS a good idea to eat as wide a variety of foods as you can handle. And with a leaky gut ,whether or not a particular food bothers you depends on whether or not larger than usual, undigested particles of those foods are able to make it through the intestinal wall into the blood stream and set off an autoimmune response which I believe is responsible for most intolerances in celiacs..

This is the principal behind the rotation diet where you eat a particular food only once every three or four days. So it is a good idea to keep testing yourself with things that you have not eaten before and to which you have not yet developed an intolerance, and not to eat too much of that food if you do tolerate it. Just add it in to your rotation. There are lots of foods out there that most of us have not tried. Very few people eat parsnips or rutabagas or turnips, many do not eat swiss chard... I don't know what foods you have tried outside your regular diet to see if you can eat them.

Oftentimes, whether or not you can eat a food on a given day depends on what (if anything) you eat with it. If you eat the food alone, it is definitely going to be exposed to the intestinal wall continuously. If it is eaten as part of a meal with other foods it has less chance of prolonged contact with the intestinal lining.

So if you ate the corn chex with some almond milk and half a banana, it would be a lot better than just eating a handful of corn chex, for example. And whether or not you eat it on an empty stomach makes a difference too. If you eat something you know you tolerate so that that is churning through the digestive tract, and then add in a little of something else, it does not get as much attention as if it were there alone.

[catarific]

What she did mention was that this applied after being cleared of any other type of gastrointestinal disorder which would include leaky gut. I know for myself, I have lost over 15 lbs - now putting me at 101 lbs all dressed with shoes. I have stopped eating vegetables and red meat. The only fruit I can abide by is a 1/2 banana daily. I live on baked fish and chicken and sometimes turkey - although turkey sometimes gives me problems. If I can handle these foods - could I still have leaky gut? Wouldn't leaky gut apply to all foods being ingested and not just certain ones? I have given up sweets and cereal - seems that cereal doesn't do good with me (the rice chex gluten free) all the time. On some days I can handle cereal - other days not (for whatever reason). But I do see what she is saying - that when you start having sensitivities and avoid them more seem to abound that weren't there before. Truthfully I have given up trying to understand why things happen and feel blessed when I have good days now!

Thanks Mushroom - that makes a lot of sense!

[Crystal17]

I just joined for this exact reason. I have been diagnosed for 4 years and I keep switching doctors because I still feel horrible even though I am on a gluten free diet. I was wondering if you all have taken food allergy test? I always have to find information from the internet and present it to my doctor, they keep telling me i am over reacting. The less i eat the better I feel, but I went down to 85 ilbs. So I was forced to eat more food. Recently, I would say the past 6 months its horrible. I sleep about 10 hours a day. My stomach feels like I am pregnant and I have constant pain, almost like a brick is stuck in my stomach. From the previous posts I can see that I need to try to cut out diary and soy, I am allergic to gluten free oats and didnt know that redmill had it in their flours. I just used it to make biscuits. I did buy brand new steel pots 3 weeks ago. I do feel similar to when I was just diagnosed. I have read from another site about being diagnosed with celiac they became allergic to tomatoes, eggplant, and bell peppers. I was thinking of cutting it out. I dont have health insurance and I have type 1 diabetes. I am still looking for a gastroenterologist, this will be my fifth one. The last doctor said he didnt believe I had celiac because I was hispanic and its not possible, even though I had all the test, and endoscopy which all proved that I do. Do you believe a food allergy test should be my next test? I constantly meet celiac that says they feel 100 percent better as soon as they go gluten free I wish this was true for everyone.

[cahill]

I just joined for this exact reason. I have been diagnosed for 4 years and I keep switching doctors because I still feel horrible even though I am on a gluten free diet. I was wondering if you all have taken food allergy test? I always have to find information from the internet and present it to my doctor, they keep telling me i am over reacting. The less i eat the better I feel, but I went down to 85 ilbs. So I was forced to eat more food. Recently, I would say the past 6 months its horrible. I sleep about 10 hours a day. My stomach feels like I am pregnant and I have constant pain, almost like a brick is stuck in my stomach. From the previous posts I can see that I need to try to cut out diary and soy, I am allergic to gluten free oats and didnt know that redmill had it in their flours. I just used it to make biscuits. I did buy brand new steel pots 3 weeks ago. I do feel similar to when I was just diagnosed. I have read from another site about being diagnosed with celiac they became allergic to tomatoes, eggplant, and bell peppers. I was thinking of cutting it out. I dont have health insurance and I have type 1 diabetes. I am still looking for a gastroenterologist, this will be my fifth one. The last doctor said he didnt believe I had celiac because I was hispanic and its not possible, even though I had all the test, and endoscopy which all proved that I do. Do you believe a food allergy test should be my next test? I constantly meet celiac that says they feel 100 percent better as soon as they go gluten free I wish this was true for everyone.

Checking for CC and checking any meds for gluten would be your first step,,which I am sure you already have done.

Allergy testing would be the next test you should ask for, and also ask about doing an elimination /reintroduction diet to pinpoint any remaining allergys or intolerances .With being a type 1 diabetic you would want to be under a doctors care while doing an elimination diet.

Hope you find the problem soon,be well

[dilettantesteph]

I wish I could. I was on a forum site similar to this one... don't remember the name of it. I had googled something and just clicked the link so I didn't really pay much attention to the name of the site. Maybe it was Health.com? But I'm not certain. I didn't see the study... just the quotes from it that I posted.

Dr Joseph A Murray is a gastroenterologist at Mayo Clinic, Rochester, MN ... but he is also either the lead or one of the lead researchers there on Celiac. He's from Ireland, where they are much more advanced in the awareness of Celiac, as that is one of the hotspots for genetics linked to Celiac, from what I understand.

You could probably google: Dr Joseph A Murray Mayo Clinic refractory sprue. If you can't find it that way, you could probably call Mayo Info line and ask how you could get a copy or a link. Good luck... hope this helps you!

I'd forgotten when this was and just found it again. I googled away and couldn't find that particular study. I didn't phone the Mayo Info line though. Maybe that would work.

I did find where someone else gave that quote, but that person didn't site the original reference.

[GlutenFreeManna]

I just joined for this exact reason. I have been diagnosed for 4 years and I keep switching doctors because I still feel horrible even though I am on a gluten free diet. I was wondering if you all have taken food allergy test? I always have to find information from the internet and present it to my doctor, they keep telling me i am over reacting. The less i eat the better I feel, but I went down to 85 ilbs. So I was forced to eat more food. Recently, I would say the past 6 months its horrible. I sleep about 10 hours a day. My stomach feels like I am pregnant and I have constant pain, almost like a brick is stuck in my stomach. From the previous posts I can see that I need to try to cut out diary and soy, I am allergic to gluten free oats and didnt know that redmill had it in their flours. I just used it to make biscuits. I did buy brand new steel pots 3 weeks ago. I do feel similar to when I was just diagnosed. I have read from another site about being diagnosed with celiac they became allergic to tomatoes, eggplant, and bell peppers. I was thinking of cutting it out. I dont have health insurance and I have type 1 diabetes. I am still looking for a gastroenterologist, this will be my fifth one. The last doctor said he didnt believe I had celiac because I was hispanic and its not possible, even though I had all the test, and endoscopy which all proved that I do. Do you believe a food allergy test should be my next test? I constantly meet celiac that says they feel 100 percent better as soon as they go gluten free I wish this was true for everyone.

Have you had your thyroid checked? I was reading somewhere recently that there is a correlation of people with celiac and type I diabetes also having thyroid diseases, especially if the celiac disease went undiagnosed for many years. Make sure you get the full, indepth panel not just the regular screening.

[Crystal17]

Have you had your thyroid checked? I was reading somewhere recently that there is a correlation of people with celiac and type I diabetes also having thyroid diseases, especially if the celiac disease went undiagnosed for many years. Make sure you get the full, indepth panel not just the regular screening.

Yes I have had my thyroid check. Nothing abnormal. I keep a strict gluten free diet, Its hard to get doctors to get the test I want, I request it and the always tell me I am not being completely gluten free and I don't have problems because I am young. I am not too young anymore and I don't get why doctors treat me like I have lost my mind. I want to record my conversations with doctors, to document them. I have left my last 4 doctors for lack of patient care. Its frustrated.