Relief?

[CarrieBoo]

I did a search on the board and didnt' find the answer I was looking for, so I appologize if this has already been asked.

I have had stomach/digestive problems for years and the dr's told me it was IBS. However, an IBS-safe diet has not been working for me, and many of the symptoms are similar to celiac/gluten intolerance. Thus, yesterday I ate completely Gluten Free and I feel great (usually I am always bloated and have gas pains all day). Is it possible to get instant relief of these symptoms?

I am waiting to see the doctor so I can suggest the tests for celiac (can't get an appointment until end of April, cannot believe he didn't test me before....).

Thanks for any replies!!

[nettiebeads]

Some posters have had immediate relief, others a slow lessening of symptoms. As an autoimmune disorder, it seems that celiac has a very high number of variables for each person with the disease. The fact that you found relief right away from the gluten-free diet as opposed to the ibs safe diet sure does make one suspicious of celiac disease for you. Remember though, if the dr orders any tests - full celiac bloodwork panel or the endoscopy, you must have been consuming gluten for a long time to have any hope of a positive result. Or you can just go on your merry gluten-free way---the diet challenge is a valid diagnostic tool, too. That's how I was dx'd oh, so many years ago. No testing for me, but I am curious about the genetic tests.

Annette

[Guest cassidy]

I have been gluten-free for about 3 months. It took me about a week to notice a difference. It is great that you are feeling better. Please try the diet for a while and don't let negative doctors or negative blood tests get in the way of you listening to your body.

Also, I have had many, many ups and downs over the last three months. I've identified many other foods I can't eat and it hasn't always been easy. It is great that you are feeling better right away, but please keep in mind you may not always feel great in the beginning, it is normal to get glutened and to have days when you don't feel wonderful. It takes a while for your body to heal.

Good luck figuring it out. This board is really great.

[CarrieBoo]

Thanks for your replies, I really appreciate it! I have so many concerns, like if I stay on the gluten-free diet until my dr. appointment, then my blood test may come back negative. I know I should definelty listen to my body, but shouldn't I get an official diagnosis so I can be strict on my diet and not risk damaging my intestine further? OR, if it is just a gluten intolerance, then maybe I need not be so strict on the diet...if you know what I mean. Plus, I had a piece of cake today and I felt the bloating/gas/gurgling about 20 min later...it just seems like too much of a coincidence for it not to be a problem with gluten! I am just confused at this point...I am glad it helped me feel better, but I have so many symptoms that I would never have thought would have been from Celiac!

Here are my symptoms (please let me know if any of these may not relate to celiac):

constipation (I thought celiac caused mostly diarrhea...though I have bouts every now and then)

fatigue

lack of concentration at times

depression

bloating, gas, and stomach pain (mostly after eating)

hunger (sometimes feel extremely hungry only a short while after eating)

headaches

loss of tooth enamel (dentist says grinding, and I do grind when I sleep, but I have no enamel left and I am only 27)

joint pain (mostly knees from having flat feet, and back)

I cannot remember rash (but I had red itchy bumps in odd spots at one point a few months ago then went away).

It seems strange that many of my symptoms seemed to worsen within the past few months...I feel that if this was celiac then these symptoms should have appeared earlier in my life!!

Thanks for listening

[Ursa Major]

Wow, Carrie, EVERY single one of your listed symptoms is quite typical for celiac disease! By the way, constipation is also very common. I used to get a lot of constipation, with the occasional bout of diarrhea from earliest childhood. Only last summer, when I went into full blown celiac disease did I end up with chronic diarrhea for six months, until I went on the gluten free diet. The day after I stopped having gluten the diarrhea stopped (and only returns when I accidentally eat something wrong).

Loss of tooth enamel is very common in celiac disease. Brain fog (loss of concentration) is a typical symptom ALL of us get at times. Bloating, gas and stomach pain is a good indication that you were glutened. Joint pain is very common with celiac disease, that's why many of us were diagnosed with fibromyalgia before the celiac disease was recognized. The rash sounds like it may have been Dermatitis Herpetiformis (celiac disease of the skin). I used to have those in the back of my neck especially, but they are gone now. Since gluten effects the brain as well, depression is a very common symptom as well, so are headaches. Hunger after eating could be because your body didn't get what it really wants and needs, and because your intestines may be too damaged to digest the nutrients properly.

Anyway, you pretty much know the answer already. You feel well without gluten, and you feel terrible after eating cake. And you have a lot of symptoms that are pretty typical of celiac disease. It's your choice if you want to keep eating gluten so you can be tested accurately, or just go gluten free. If you go gluten free, you need to be aware that its not only wheat, but rye, barley, triticale and oats you will have to stop eating.

Let us know what you decide to do, and we will help you figure it out!

I'm glad you found us!

Oh, and another thing: Yes, I am one of those people who initially got instant relief (after suffering for 52 years!). But then, after three months I guess that my intestines had healed enough for me to absorb not only good things again, but other things I am intolerant to as well. So, when I started having the terrible joint pain again, I had to figure out the other intolerances. I am still getting better, and getting used to having very little left to eat!

[marciab]

I noticed the first day that I went completely gluten free that I was no longer hyper. I didn't even realize that I had been hyper until I then. I thought I was just antsy. So did my family, my co-workers, etc. I waited 3 weeks to tell my doctor just cause I couldn't believe it.

It took a long time to get my stomach problems under control because I had so many other food allergies / intolerances going on at the same time.

Oh, and I had been diagnosed with IBS for 30 years.

Good luck to you and welcome to the board. There is a lot of great info and people here .. Marcia

[Jen H]

Hey Carrie Boo,

I had many of the same symptoms you mentioned before I was diagnosed. I was actually in your same shoes. I had to wait to be tested as well and REALLY wanted to start eating gluten free because it was making me feel better. So I did. I had to go back to eating gluten for the test which was hard. I was pretty sick. The good news is that my test and biopsies both came back positive. Are you seeing a GI doctor for the test? If so, is there any way you could have the test done sooner? Maybe through your regular doctor?

[Nancym]

I noticed within a day or two and I was GREAT for about a month, then things got worse again, but in a different way. I didn't have the miserable cramping, but I was back to pooping many times a day. I think there were several things going on including another autoimmune disease that can affect the bowel, and I was also found to be sensitive to milk products too.

[elonwy]

I noticed a big difference immediatly, but it took a few months before the more persistent symptoms went away, like the itchy rash everywhere. After the first week though, I felt fantastic, and its only gotten better since. When I accidently ingest gluten though, it does get right back to square one again pretty quick, but the symptoms usually last 3-5 days and then I'm back to feeling good. i'm glad it made you feel better.

Elonwy

[CarrieBoo]

I would like to thank everyone for the replies! I am going to try the gluten-free diet for a week to see how that goes, then ingest it a week before my dr appointment so I will have it in my system before I request the blood test.

My only problem is where I live...it is very hard to find items for a specialized diet, and it is often not even available here. My biggest problem is breakfast, I love cereal, so I don't know what to eat besides eggs!!

Thanks again for the info!!

[ravenwoodglass]

I did a search on the board and didnt' find the answer I was looking for, so I appologize if this has already been asked.

I have had stomach/digestive problems for years and the dr's told me it was IBS. However, an IBS-safe diet has not been working for me, and many of the symptoms are similar to celiac/gluten intolerance. Thus, yesterday I ate completely Gluten Free and I feel great (usually I am always bloated and have gas pains all day). Is it possible to get instant relief of these symptoms?

I am waiting to see the doctor so I can suggest the tests for celiac (can't get an appointment until end of April, cannot believe he didn't test me before....).

Thanks for any replies!!

My IBS symptoms went away very quickly, within 3 days, it seemed like a miracle. I was on an allergist guided elimination diet and thought I had died and gone to heaven! It was the first time in 15 years I had not had painful D several times a day. When he told me not to be surprised if my other symptoms went away I was just 'yea, right'. To my surprise within 6 months I realized I had no more migraines, my fibro was gone, my energy was back, my ataxia was gone (and I had been ataxic since childhood!) I still send him cards on every holiday, after all that little elderly allergist saved my life, something all the neuros, rheumies, internists and GI doctors hadn't done.

[ravenwoodglass]

My only problem is where I live...it is very hard to find items for a specialized diet, and it is often not even available here. My biggest problem is breakfast, I love cereal, so I don't know what to eat besides eggs!!

Thanks again for the info!!

First rely on your bodies response to the diet not the blood tests, I am not saying don't get them just don't dismiss gluten intolerance if they come back negative. As for breakfast, often I will have a carnation instant breakfast, the powdered not the ready mixed and don't get the chocolate malt. I also often just grab my baggie and run, in the baggie is a mix of gluten-free nuts, sunmaid raisens, chocolate chips, gluten-free dried fruit. I add a hunk of cheese in my hand and I have breakfast. When I want to sit down I have eggs or buckwheat cereal (very much like cream of wheat) or an extra chicken breast with fruit leftover from the night before. Make sure you have checked with your doctor to make sure the challange is needed (in his opinion) many are getting more savvy and giving a diagnosis by dietary response alone. If you got a great deal of relief from the diet the challange may be very rough. You may be able to get a lab slip called in over the phone today if you call and if you haven't been gluten-free more than a few days you would still get an accurate result, if you would get an accurate result at all, many of us never show positive or show a low positive and doctors will often say a low positive is a negative, get sicker and we'll test you again.

[wolfie]

I noticed a pretty quick improvement with the gluten-free diet.....like the first couple of days. I also had been diagnosed with IBS and told to follow a high fiber, whole grain diet......no real improvement there, except more pooping...go figure. The only time I saw improvement was when I did South Beach for a while......cut out a lot of the grains and increased veggies. Then I got positive bloodwork and went gluten-free. I have only been at it for about 3 months and still have some ups and downs, but overall, a huge improvement and no brainer for me. Thank God for my nutritionist....she is the one who suggested I be tested for Celiac (she even thought it would come back negative, but I am so glad that I found the root of my issues).

I used to eat cereal (Kashi GoLean) every morning. Now I eat Van's gluten-free waffles. You can find them at Kroger, Giant Eagle, Meijer. Careful with syrups though....I had been using some that are questionable, but Aunt Jemima is gluten-free.

Good luck and hope you find some answers!

[Ursa Major]

Carrie, who says that you have to eat 'breakfast foods' for breakfast? If I would go by that, I could never eat breakfast again!

I eat meat or fish and vegetables for every meal, and peeled pears, banana chips, nuts and dark chocolate for snacks. So, my breakfast is usually stir-fry (I can't eat eggs).

[prinsessa]

I just wanted to tell you about my doctor testing for Celiac. I had been having stomach problems for about 6 months (plus many other problem that I didn't know could be related for years). I told my doctor about it and he did a blood test. The test came back negative. He suggested that I could go to a GI specialist. I told him that I had already been doing the gluten free diet for a couple of weeks and felt much better. He told me I that I should try the diet for another month or so and he would diagnose me from that. Well....I have been doing the diet for about 6 weeks and I feel so much better. I'm glad I desided to listen to my body and not the test.

You could try to take the blood test....but it might come back negative. That doesn't mean you aren't wheat intolerant. Let us know what happens with the test.

For breakfast....I like to eat gluten free cereal (I like cinnamon Puffins with a little sugar) or gluten free waffles (I think Trader Joes are the best).

[StrongerToday]

For breakfast....I like to eat gluten free cereal (I like cinnamon Puffins with a little sugar) or gluten free waffles (I think Trader Joes are the best).

I found Puffins near me, but they had oat flour in them?!?

Carrie - if you're going to have gluten before the tests - have a piece of pizza for me please!

[jerseyangel]

I believe that the only Barbara's Cereal that's gluten free is the Honey Rice Puffins. The rest of them are not.

[CarrieBoo]

Carrie - if you're going to have gluten before the tests - have a piece of pizza for me please!

I will have pizza for you and me both!!! I cannot imagine never having another piece of pizza again...argh!!

So, my breakfast is usually stir-fry

Stir-fry, wow! I know breakfast don't need to be breakfast foods, I used to like pizza for breakfast at times, however I truly enjoy breakfast-type foods (i.e. pancakes, waffles, toast, and cereal) all through the day, for snacks as well...we'll see, I will give this diet a go for a week or so, and see how I am feeling before I get a blood test...

thanks for the help!