Can Symptoms Come And Go? Help Me Understand, New To This

[crampy girl]

Help. I am 42 yo and have been diagosed w ibs/ gerd..... Well for the past twenty years I have suffered with very painful diarrhea- an episde lasts hours and the pain is horrible, to the point I have passed out- vasovagal reaction. When I have a flare, I can't eat for the day and if I do, symptoms return. This usually lasts months at a time and then it magically dissappears. I have to take levsin during my bouts. Well about a year ago I saw a GI doc who thought I may have this celiac thing, but the initial test came back neg. So I dismissed it. He wanted to do a biopsy and I declined. Well this bout I noticed when I ate cereal by lunch time I was cramping again. Also I always "feel" it coming on - fatigued and fog headed on those days. I blamed it on depression and got on antidepressants, but it did not change any of my symptoms. So..... About a week ago I decided to stay away from all gluten, and have not had a return of the cramps... Feeling much better....and now I don't ever want to eat gluten again. Also my very first episode came on after eating a box of ritz crackers at 18yrs. I always thought it was the fat that upset my belly so, but guess it could be gluten. I am a carb freak but am pretty fit/ lean w 15% body fat. Other things, I am lactose intolerant and chronically anemic. Could this be that I don't have full blown celiac but just gluten sensitive and how come it's taken so damn long to figure this out!!!!

[Lisa]

Welcome Crampy Girl!

Many of your symptoms can be attributed to Celiac Disease and it's collateral associations. Lactose intolerance, depression and anemia are all associated with Celiac Disease. I would strongly suggest that you be tested for Celiac. Here is the test to request from your doctor:

Open Original Shared Link

In order for the above test to be as accurate as possible, it is important that you continue to eat gluten, until your testing is over.

I also, recommend that you have a endoscopy/biopsy exam. Anytime one has a history with digestive issues, it's wise to have some base testing and to rule out some critical conditions.

Testing is easy

[mushroom]

Help. I am 42 yo and have been diagosed w ibs/ gerd..... Well for the past twenty years I have suffered with very painful diarrhea- an episde lasts hours and the pain is horrible, to the point I have passed out- vasovagal reaction. When I have a flare, I can't eat for the day and if I do, symptoms return. This usually lasts months at a time and then it magically dissappears. I have to take levsin during my bouts. Well about a year ago I saw a GI doc who thought I may have this celiac thing, but the initial test came back neg. So I dismissed it. He wanted to do a biopsy and I declined. Well this bout I noticed when I ate cereal by lunch time I was cramping again. Also I always "feel" it coming on - fatigued and fog headed on those days. I blamed it on depression and got on antidepressants, but it did not change any of my symptoms. So..... About a week ago I decided to stay away from all gluten, and have not had a return of the cramps... Feeling much better....and now I don't ever want to eat gluten again. Also my very first episode came on after eating a box of ritz crackers at 18yrs. I always thought it was the fat that upset my belly so, but guess it could be gluten. I am a carb freak but am pretty fit/ lean w 15% body fat. Other things, I am lactose intolerant and chronically anemic. Could this be that I don't have full blown celiac but just gluten sensitive and how come it's taken so damn long to figure this out!!!!

Hi and welcome to the forum.

Don't feel bad about how long it took you to figure it out - you were pretty speedy compared to me And one of the main reasons is takes so long is we all get told by our doctors that we have IBS, when there really isn't a specific medical definition of what IBS is other than intestinal problems for which they can't figure out the cause

I used to get that vasovagal syncope too - in the bathroom trying to decide whether to throw up in the toilet or sit on it, and you would end up fainting on it or beside it Not a good way to live life. My symptoms were not constant either, but then in 1990 or so I became lactose intolerant - didn't know anything about lactose and gluten so no connection made. But the connection is that the enzyme that digests lactose is formed on the tips of the villi in the small intestine, these same villi which get damaged by gluten, so the ability to digest lactose is often the first thing to go. Others don't realize it until they cut out gluten and the cramping and diarrhea doesn't go away. The good news is that without the gluten your villi heal and you can once again digest lactose.

Pity about declining the biopsy, it might have short-circuited the process, but then again a lot of celiacs (about 20%) will test negative on both bloodwork and biopsy, so there are no guarantees. And no, I would say that if you cannot digest lactose you are not just gluten sensitive, but you have probably got intestinal damage and full-blown celiac. Anemia is also a symptom that goes along with celiac. Have you had testing for other nutrient levels, like Vit. D, B12, folate, potassium, calcium, and have you had your thyroid tested. These are all co-riders with celiac and gluten intolerance because you are not absorbing the nutrients from your food.

Either way, celiac or gluten intolerant, you really should not eat any more gluten because you know it harms you. Good luck on your gluten free journey through the rest of your life. Any questions you have, just fire away and we will do our best from our collective knowledge to answer them

[crampy girl]

Welcome Crampy Girl!

Many of your symptoms can be attributed to Celiac Disease and it's collateral associations. Lactose intolerance, depression and anemia are all associated with Celiac Disease. I would strongly suggest that you be tested for Celiac. Here is the test to request from your doctor:

Open Original Shared Link

In order for the above test to be as accurate as possible, it is important that you continue to eat gluten, until your testing is over.

I also, recommend that you have a endoscopy/biopsy exam. Anytime one has a history with digestive issues, it's wise to have some base testing and to rule out some critical conditions.

Testing is easy

Hi Lisa, thanks for the info. I did have the initial blood screen test which came back neg. But after stopping all gluten, I am free of these horrible episodes and don't want to get them back in order for a biopsy to be done. So how acurate is the genetic testing? You don't have to eat gluten for that to be pos and if it's neg, then that means I don't have celiac, right?

I did have an endoscopy about 1999 when my symptoms flared and they couldn't figure me out. That gi doc just said I had ibs and to eat fiber.

Do you think my description fits what most people w celiac go through? Also is there a book or something I could read up on what foods have gluten? I am starving myself since all I ate before was pizza cereal pasta and bagels! Thanks

[crampy girl]

Hi and welcome to the forum.

Don't feel bad about how long it took you to figure it out - you were pretty speedy compared to me And one of the main reasons is takes so long is we all get told by our doctors that we have IBS, when there really isn't a specific medical definition of what IBS is other than intestinal problems for which they can't figure out the cause

I used to get that vasovagal syncope too - in the bathroom trying to decide whether to throw up in the toilet or sit on it, and you would end up fainting on it or beside it Not a good way to live life. My symptoms were not constant either, but then in 1990 or so I became lactose intolerant - didn't know anything about lactose and gluten so no connection made. But the connection is that the enzyme that digests lactose is formed on the tips of the villi in the small intestine, these same villi which get damaged by gluten, so the ability to digest lactose is often the first thing to go. Others don't realize it until they cut out gluten and the cramping and diarrhea doesn't go away. The good news is that without the gluten your villi heal and you can once again digest lactose.

Pity about declining the biopsy, it might have short-circuited the process, but then again a lot of celiacs (about 20%) will test negative on both bloodwork and biopsy, so there are no guarantees. And no, I would say that if you cannot digest lactose you are not just gluten sensitive, but you have probably got intestinal damage and full-blown celiac. Anemia is also a symptom that goes along with celiac. Have you had testing for other nutrient levels, like Vit. D, B12, folate, potassium, calcium, and have you had your thyroid tested. These are all co-riders with celiac and gluten intolerance because you are not absorbing the nutrients from your food.

Either way, celiac or gluten intolerant, you really should not eat any more gluten because you know it harms you. Good luck on your gluten free journey through the rest of your life. Any questions you have, just fire away and we will do our best from our collective knowledge to answer them

Hi mushroom

thanks for your post. It makes me feel better that I am not alone . I have always felt sorry for celiacs thinking my god how can anyone live without bagels and pasta! Or cookies! I love cheezits and ritz crackers too . Part of me is scared to death of this acttually being my problem all along and I don't want to accept it yet, and part of me is relieved to have figured it out and part of me is angry that I didn't figure it out sooner knowing and learning all about it in medschool- I am an md and a radiologist, and there are even classic sighns we look for on ct and barium studies that point to it. But I am a bad patient never thinking I have an illness... What scares me also is knowing about the lymphoma/adenocarcinoma increased risk. And I have been damaging my bowel for over 20 years.

I feel like an idiot.

But I am so free of my usual cramps and foggy head that I want to jump up and down. For years I have lived afraid of the episodes and all through jobs and school, I have had to have many sick days. My husband is also glad I figutred it out, I have had to miss out on so many kids activities and parties and have had so many ttimes I couldn't enjoy fam meals or dinner at a nice restaurant.

Anyway I am rambling. I do feel a bit bewildered about what to eat and have been starving hungry. I don't have alot of body fat to loose.any books out there? I downloaded the apps, thanks for those.

And thanks for taking the time to read this. God bless,

crampy girl who is no longer crampy!!

[GFinDC]

I am going to be lazy and repost from another thread.

Welcome to gluten-free living!

gluten-free with a whole foods diet is actually a very healthy diet for anyone to follow. Avoid all the gluten-free products and stick with whole foods and cook them yourself at home. You will learn what works for your body faster that way since you will know everything that you have put in your food.

There are some things that you will probably be ok with, like Mission corn tortillas, or Enjoy Life brown rice wraps. And Redbridge gluten-free beer if you don't overdo it anyway.

Keep your diet simple at first, and jot down everything you eat every day and the symptoms you have. It is not unusual for us to have additional food intolerances beyond gluten. Some of the common things that bother us are dairy, soy and nightshades (potato, tomatoes, peppers), in addition to gluten (wheat, rye, barley, and oats).

Family members of celiacs have a higher than usual chance of getting celiac.

It might be easier for you if your hubby goes gluten-free at home also. That would also be cheaper since you won't have to buy 2 of everything. Shared condiments are a no-no for instance, so you would need your own peanut butter and he would have to have his own separate peanut butter, mayo etc..

Rice, meat and veggies is a good meal to start with. Eggs, avocadoes for guacamole, are good too. Try to steer clear of excessively sugary drinks or foods.

Do a search on the "Top 8 food allergens), which are good starting point for things to watch out for.

Check out a search on "celiac related conditions" or "celiac associated conditions" for general info. Hashimotos thyroiditis is one women get more often than men. Might be good to be tested for it.

The diet get s easier after a while, but feel free to ask questions cause the learning curve can be steep. We have all been there though.