No Pain, Yet Gluten Intolerant! Make Sense?

[susiequsie]

Hello everyone: This is my first post here. I have most symptoms (diarrhea, horrible smelly gas, stools that smell awful & sometimes float) of gluten intolerance and have been following a gluten free (almost) diet for several months. This diet has improved my symptoms for the most part, BUT I do not have cramping or abdominal pain at all. Everything I read relates pain as a big symptom. Has anyone else experienced (or should I say NOT experienced pain) and yet have a gluten intolerance?

[elye]

Many celiacs are "silent' before diagnosis, i.e., have NO noticeable symptoms, gastrointestinal or otherwise. I was one of them, asymptomatic with the exception of borderline low iron. When I got the positive blood panel results, I was certain that they had mixed up my test with someone else's! Threw me for a loop... . .. ..

[jimgil]

Hi Susie, I've recently become gluten intolerant and have the same issues as you but without (except for an odd twinge) pain.

I went for many days totally gluten free and the smell, and most other symptoms went away (phew!!) but yesterday I ate something by mistake that had gluten in it and that awful pong is back this morning.

I find it lingers around me and my clothes (it is so 'clingy') - and the house infact. Traditional air fresheners/deoderants just don't do the trick, have you, or anyone, any tips how to get shot of it?

I'm frightened to have guests to be honest after an attack because they wonder about that most awful aroma and it can hang around for days! Even washing clothes/sheets etc is sometimes not really sufficient.

Any tips gratefully appreciated!!!

[ravenwoodglass]

I had no real pain just uncontrollable D with no warning for many years. Because it wasn't painful I just accepted the IBS diagnosis and watched the rest of my body deteriorate with seemingly unrelated disorders. The D did eventually become extremely painful with symptoms that the GI said later were more like Chrons than IBS. There are many of us who will have on again off again symptoms and varying degrees of pain. I am glad you recognized your problem with gluten before your life became a living hell.

[susiequsie]

Many celiacs are "silent' before diagnosis, i.e., have NO noticeable symptoms, gastrointestinal or otherwise. I was one of them, asymptomatic with the exception of borderline low iron. When I got the positive blood panel results, I was certain that they had mixed up my test with someone else's! Threw me for a loop... . .. ..

Hi Emily,

Thanks so much for responding. I just found your response today! I imagine you were thrown for quite a loop! I just can't believe I've had no pain whatsoever. And I sure don't want it!

[susiequsie]

Hi Susie, I've recently become gluten intolerant and have the same issues as you but without (except for an odd twinge) pain.

I went for many days totally gluten free and the smell, and most other symptoms went away (phew!!) but yesterday I ate something by mistake that had gluten in it and that awful pong is back this morning.

I find it lingers around me and my clothes (it is so 'clingy') - and the house infact. Traditional air fresheners/deoderants just don't do the trick, have you, or anyone, any tips how to get shot of it?

I'm frightened to have guests to be honest after an attack because they wonder about that most awful aroma and it can hang around for days! Even washing clothes/sheets etc is sometimes not really sufficient.

Any tips gratefully appreciated!!!

Hi jimgil,

So, you are just recently gluten-free? Did you get an official diagnosis or arrive at it on your own? I've hung around digestive boards at WebMD for a couple of years for other problems, learned a lot about gluten intolerance, recognized it when it started, and went gluten-free about 6 mos. ago. I guess I probably should have some testing done to see if I have malabsorption. I know the blood tests are not too reliable.

Anyway, yes, I did learn on the same board about Just a Drop (justadrop.net.) It's a deodorizer that you add just one drop to the toilet water BEFORE you go and it really takes away the odor. Try the website. I sent away for it and you get 2 small bottles for about $15. I keep one in my purse and one in the bathroom. I would recommend that to you.

Thanks for responding.

[susiequsie]

I had no real pain just uncontrollable D with no warning for many years. Because it wasn't painful I just accepted the IBS diagnosis and watched the rest of my body deteriorate with seemingly unrelated disorders. The D did eventually become extremely painful with symptoms that the GI said later were more like Chrons than IBS. There are many of us who will have on again off again symptoms and varying degrees of pain. I am glad you recognized your problem with gluten before your life became a living hell.

Hi ravenwoodglass,

Thanks for responding. It sounds like you have really been through it! Thank goodness you finally were diagnosed correctly and got things under control with a gluten-free diet. Actually, I've been most fortunate to have learned so much about it on WebMD digestive boards. Being there actually led to diagnosis for another mystery illness that I had tried for 11 yrs. to get diagnosed. I ended up with a colon resection once I was finally diagnosed. Since I'd learned so much about celiac along the way, it wasn't hard to figure out when it started sometime after my surgery.

I've never had any testing (I know the blood test is worthless), but see that you've had some of the gene testing. If you don't mind my asking, where did you get it done and what specifically did you ask for? I know that Prometheus won't send the report to you (if I'm paying for it, I want the results!) and I know that Enterolab offers testing too. I start looking at the tests and it just becomes a blur! What should I get?

[ravenwoodglass]

Hi ravenwoodglass,

Thanks for responding. It sounds like you have really been through it! Thank goodness you finally were diagnosed correctly and got things under control with a gluten-free diet. Actually, I've been most fortunate to have learned so much about it on WebMD digestive boards. Being there actually led to diagnosis for another mystery illness that I had tried for 11 yrs. to get diagnosed. I ended up with a colon resection once I was finally diagnosed. Since I'd learned so much about celiac along the way, it wasn't hard to figure out when it started sometime after my surgery.

I've never had any testing (I know the blood test is worthless), but see that you've had some of the gene testing. If you don't mind my asking, where did you get it done and what specifically did you ask for? I know that Prometheus won't send the report to you (if I'm paying for it, I want the results!) and I know that Enterolab offers testing too. I start looking at the tests and it just becomes a blur! What should I get?

I got my gene's tested through Enterolab and I just asked for the gene panel when I placed my order. My DD had been tested for celiac again at a big city hospital after she had been gluten-free for a couple of years. The doctor there did a gene panel on her and of course told her that her previous diagnosis must have been false because she didn't have the genes. Since I needed to have soy and casien tested, I had a reaction to a med and just was not healing, I threw in the gene testing also. It turned out that my gene is a very rare one for a caucasian, it is usually found in Oriental populations and I have two copies. One from each parent. My DD must then have at least one copy of it but it is not DQ2 or 8 so the doctor said the gene panel was negative and may not have even been looking for other genes.

If your doctor will order the Prometheus lab and you prefer them then he can give you a copy of the report, and you would be legally allowed one. I make sure I get copies of all labs from any doctor I see.

You might want to post the query about the best gene testing in a seperate thread also and get more opinions.

[susiequsie]

I got my gene's tested through Enterolab and I just asked for the gene panel when I placed my order. My DD had been tested for celiac again at a big city hospital after she had been gluten-free for a couple of years. The doctor there did a gene panel on her and of course told her that her previous diagnosis must have been false because she didn't have the genes. Since I needed to have soy and casien tested, I had a reaction to a med and just was not healing, I threw in the gene testing also. It turned out that my gene is a very rare one for a caucasian, it is usually found in Oriental populations and I have two copies. One from each parent. My DD must then have at least one copy of it but it is not DQ2 or 8 so the doctor said the gene panel was negative and may not have even been looking for other genes.

If your doctor will order the Prometheus lab and you prefer them then he can give you a copy of the report, and you would be legally allowed one. I make sure I get copies of all labs from any doctor I see.

You might want to post the query about the best gene testing in a seperate thread also and get more opinions.

Sounds like posting in a different thread is what I need to do. I'm just a 'newbie' to this gene stuff. You start talking DQ2 and 8 and my eyes just glaze over. Sorry, I'm not there yet. I'll have to do this in a few weeks. I'm off to the hospital in the morning for a partial knee replacement.

Thanks for your advice.

[jimgil]

Good luck Susie!

Thanks for your tip and yes I'm so far self diagnosed, having had excellent gluten free period and then recognizing the setback and causes when it happened.

At the moment though I am a real novice too, I need a really good list of can and can't eats, and to be honest even here haven't found one.

Got so many questions some very simple like can I eat a Mars bar or Twix!!

[ravenwoodglass]

At the moment though I am a real novice too, I need a really good list of can and can't eats, and to be honest even here haven't found one.

Got so many questions some very simple like can I eat a Mars bar or Twix!!

That's a big no to the Twix. They are a candy bar with a cookie so they have wheat. Here is a link to a list by the Celiac Sprue Association of things that are safe and things that are not.

Open Original Shared Link

As for any processed food the best thing to do is to call the 800 number on the package and ask. Gluten can be in many items and barley does not have to be declared, or rye or oats. To heal the most quickly you should try to go with as much unprocessed naturally gluten free food as you possibly can.

[jimgil]

Hi Ravenwoodglass appreciate your reply and so sorry to read of all your troubles.

Thanks for the link and it is helpful, though it does kind of reinforce what I was saying - eg you can drink wine brandys (and spirits??) - unless they've got preservatives (I thought alcohol didn't need preservatives!!)............... there just seems to be a qualification with nearly everything!

I live in a country (Slovenia) where labelling is not in English, though you can buy some brand names eg Heinz Ketchup etc, I just need a guideline list and probably have to learn by my mistakes thereafter.

Also I like red meats (which originally I understood to be ok) and cheeses but again it seems there are so many dos and don'ts! I've a lovely chunk of gouda but am frightened to open it!

I appreciate all of us have to live with these issues and the question will doubtless have been asked many times over, so I sincerely apologize for going over what to many of you will be old ground, but I have to try and start somewhere (reading lots in this forum has already really helped ) but all additional links greatly welcomed!

[ravenwoodglass]

Hi Ravenwoodglass appreciate your reply and so sorry to read of all your troubles.

Thanks for the link and it is helpful, though it does kind of reinforce what I was saying - eg you can drink wine brandys (and spirits??) - unless they've got preservatives (I thought alcohol didn't need preservatives!!)............... there just seems to be a qualification with nearly everything!

I live in a country (Slovenia) where labelling is not in English, though you can buy some brand names eg Heinz Ketchup etc, I just need a guideline list and probably have to learn by my mistakes thereafter.

Also I like red meats (which originally I understood to be ok) and cheeses but again it seems there are so many dos and don'ts! I've a lovely chunk of gouda but am frightened to open it!

I appreciate all of us have to live with these issues and the question will doubtless have been asked many times over, so I sincerely apologize for going over what to many of you will be old ground, but I have to try and start somewhere (reading lots in this forum has already really helped ) but all additional links greatly welcomed!

I can tell you that last time I checked the Heinz ketsup was gluten free, also good to know is that their distilled vinager is corn derived so if you make something that needs distilled vinegar Heinz is a good brand to grab. Do you have a translator program on your computer? Perhaps the brands that you are seeing in your country have info on their websites that could be translated into english. You can also enter the name of the product you question into a search engine like google with the word gluten. Many times the companies own gluten statement will come up.

Any meats should be okay as long as they are as they were when slaughtered. If nothing is added and they are just fresh meat they will be okay. If you have particular brands of processed foods that you can get you might want to try posting a query in the products section and see what others have found out about it.

I don't eat cheese but if you ask about the Gouda specifically in that section someone I am sure would know.

Please don't worry about asking questions that have already been asked, we have all been at the starting point and do know how hard it is at first. You can also feel free to vent when needed, this is one place where most are sure to understand.

[jimgil]

What a brilliant reply - you're a star!

I hope to use this forum a lot as it is a really supportive and friendly place!

[Mtndog]

Ironically, I never had any pain (cramps) either!