Waiting For Biopsy Results- Dr. Says It's Probably Ibs

[jessicalw28]

I had a endoscopy and colonoscopy done on Monday 11/29 and am waiting for the results. I have been having horrendous hives since June and diarrhea, bloating and gas since July/August. I've been tested for allergies and have had the celiac blood testing done. No allergies and negative blood test. I've seen and dermatologist, allergist, immunologist and GI doc. No one can figure out what's wrong. I am currently on Allegra, Zantac and hydroxyzine for the hives. Hives are always there, they just move around and are worse some days than others. They are usually symmetrical (both arms, both legs, et.) I've also had a couple of episodes with swelling in my lips, eyes and hands. I'm on Levbid for the diarrhea, which gives me a terrible dry mouth.

I have been suspecting celiac disease for the past few months mainly because I also have other chronic symptoms like heartburn, eczema, lactose intolerance, canker sores, irregular periods, anxiety and tooth enamel defects. I have an aunt (not blood related) with celiac and she suspects it too.

The Dr. took several biopsies throughout my GI tract. He said that he did not see any signs of celiac or inflammatory bowel disease. He did see Barretts Esophagus cause by my chronic heartburn. I am anxiously awaiting the biopsy results. Because he did not see anything with the scope, he is calling it IBS for now. I am frustrated with this diagnosis. I really don't think IBS is a real diagnosis, but just something the Dr. tells you when they can't figure you out.

I've been on a mostly dairy free diet for about 2 months now and have seen a tiny bit of improvement with the gas a diarrhea. The lactaid pills did not work at all.

Excuse my details, but my stools before the problems were soft, but formed (left little or no residue on the TP). I went once a day on average, usually after breakfast. Now my stools range from very soft to runny. I go about 2-3 times a day. The color is still normal, but the stools stick and leave streaks in the toilet when flushed. I also see lots of undigested matter and even the little beads from inside the capsule of one of my meds. Also, I have to wipe several times to get clean and have trouble with skin irritation. My gas is very malodorous and embarrasing. Gas-X and peppermint do not help much.

So, my main issues are GI related and the hives. Anyone have any thoughts?

[ravenwoodglass]

You have had the testing done so now is when you give the diet a good strict try and see if it helps. You don't have to wait on the results and your response to the diet is what really counts as false negatives are all too common in testing. Your in a great place to learn what you need to learn about the gluten free lifestyle so feel free to ask any questions you need to.

[shopgirl]

The Dr. took several biopsies throughout my GI tract. He said that he did not see any signs of celiac or inflammatory bowel disease. He did see Barretts Esophagus cause by my chronic heartburn. I am anxiously awaiting the biopsy results. Because he did not see anything with the scope, he is calling it IBS for now. I am frustrated with this diagnosis. I really don't think IBS is a real diagnosis, but just something the Dr. tells you when they can't figure you out.

He couldn't have seen signs of Celiac with just the scope

[mushroom]

Well, some gut damage can sometimes be seen through the scope but the reason they take the biopsies is because most can't. I agree with Ravenwoodglass, to try the diet right away for a good three-month trial - you have suffered long enough. Your symptoms certainly sound like celiac symptoms and some of us have it and do test negative. It is encouraging you have noted some improvement by eliminating the lactose. Most people who have damage to their small intestine are lactose intolerant until they healed. Good luck on the gluten free diet and stay in touch.

[gf-soph]

You sure sound like a celiac, or non-celiac gluten intolerant. Even if you don't get the celiac diagnosis, with your variety of symptoms and family history I would definitely give the diet a long go. I'm one of the many people who think that IBS doesn't count as a proper diagnosis, it's what they tell you when they can't figure you out. There is clearly something more serious going on, and you might need to advocate for yourself if the drs are going to brush you off with 'ibs'.

Once you have been on the gluten free diet for a while, if you are still getting the hives and other symptoms I would look in to the RPA elimination diet. It eliminates food chemicals called salicylates, amines and glutamates, as well as a lot of perservatives and colourings. I mention is as it was developed in part to help people with chronic hives. People can have very strong food intolerances to these chemicals that cause hives, these aren't the same as allergies and wouldn't show up in allergy testing. I am on the diet for other reasons but I have found that I react to some chemicals with a very painful flushing of the face which only goes away with antihistamines, a dr I saw explained that it was the same process as getting hives but with a different expression. I haven't had the horrible flushing while I have been following the diet properly.

If you're interested I have written about the diet in a few other posts, or you're welcome to PM me as it can be hard to find information about the diet outside of Australia.

[jessicalw28]

You have had the testing done so now is when you give the diet a good strict try and see if it helps. You don't have to wait on the results and your response to the diet is what really counts as false negatives are all too common in testing. Your in a great place to learn what you need to learn about the gluten free lifestyle so feel free to ask any questions you need to.

I am starting the diet tomorrow! And yes, I have been able to find lots of information from this site. It's good to hear from people with personal experience. There are so many different types of symptoms! The medical sites, just don't cover everything.

[jessicalw28]

He couldn't have seen signs of Celiac with just the scope

[jessicalw28]

Well, some gut damage can sometimes be seen through the scope but the reason they take the biopsies is because most can't. I agree with Ravenwoodglass, to try the diet right away for a good three-month trial - you have suffered long enough. Your symptoms certainly sound like celiac symptoms and some of us have it and do test negative. It is encouraging you have noted some improvement by eliminating the lactose. Most people who have damage to their small intestine are lactose intolerant until they healed. Good luck on the gluten free diet and stay in touch.

I've been lactose intolerant for most of my life, and the other problems have been pretty chronic too. If I do have celiac, I've probably had it for a long time. Maybe this episode is the first major flare up.

[jessicalw28]

You sure sound like a celiac, or non-celiac gluten intolerant. Even if you don't get the celiac diagnosis, with your variety of symptoms and family history I would definitely give the diet a long go. I'm one of the many people who think that IBS doesn't count as a proper diagnosis, it's what they tell you when they can't figure you out. There is clearly something more serious going on, and you might need to advocate for yourself if the drs are going to brush you off with 'ibs'.

Once you have been on the gluten free diet for a while, if you are still getting the hives and other symptoms I would look in to the RPA elimination diet. It eliminates food chemicals called salicylates, amines and glutamates, as well as a lot of perservatives and colourings. I mention is as it was developed in part to help people with chronic hives. People can have very strong food intolerances to these chemicals that cause hives, these aren't the same as allergies and wouldn't show up in allergy testing. I am on the diet for other reasons but I have found that I react to some chemicals with a very painful flushing of the face which only goes away with antihistamines, a dr I saw explained that it was the same process as getting hives but with a different expression. I haven't had the horrible flushing while I have been following the diet properly.

If you're interested I have written about the diet in a few other posts, or you're welcome to PM me as it can be hard to find information about the diet outside of Australia.

It's good to know that not everyone agrees with the IBS diagnosis. Most medical people think it's valid, I just think it's an excuse to keep looking for the root of the problem. I am starting the gluten-free diet and if that doesn't work, I'll try other foods like soy . I eat a lot of that too. My fiance is vegetarian.

I also get some facial flushing after eating, but haven't been able to link it to anything. Sometimes it's alcohol, but I think that's pretty normal. It happens with just food too. It's not painful, just reddening and a warm feeling of my face and neck. It's different than the angioedema (swelling).

[jessicalw28]

Has anyone heard of people having trouble with artificial sweeteners? I drink a lot of diet soda (2 per day), but I had been drinking it long before the hives and GI problems. I know I probably should quit. It doesn't help my acid reflux

[Judy3]

Has anyone heard of people having trouble with artificial sweeteners? I drink a lot of diet soda (2 per day), but I had been drinking it long before the hives and GI problems. I know I probably should quit. It doesn't help my acid reflux

Artificial sweetners especially Aspartame is evil. I was diagnosed with IBS and Fibromyalgia years ago and suffered for a long time. I stopped consuming Aspartame (Equal) and my Fibromyalgia symptoms went away... leaving the door open for them to figure out once and for all that I have Celiac. Dump the diet soda and drink water or iced tea. The only soda I drink now is Zevia (occasionally) and it's sweetened with Stevia.

[ravenwoodglass]

Has anyone heard of people having trouble with artificial sweeteners? I drink a lot of diet soda (2 per day), but I had been drinking it long before the hives and GI problems. I know I probably should quit. It doesn't help my acid reflux

Lots of people have trouble with the artificial sweeteners. I avoid them. I also don't really care for HFCS so what I do is pour a quarter of a glass of juice of some kind and top it off with a 'sparking' water that has nothing but water and carbonation. Tasty and gives me not only the 'fizz' that I want but also a touch of vitamin C. My favorite is using the fresh squeezed juice of one orange in it.

[jessicalw28]

I found out that I need to stop drinking soda anyway, because of my Barrett's esophagus. I'll be sticking to water and tea now. I absolutely love hot tea of almost any kind Coffee is going to be hard to give up though... Still waiting for biopsy results. I'm hoping to have them by Wednesday or Thursday. I'll keep you guys posted.

[ravenwoodglass]

I found out that I need to stop drinking soda anyway, because of my Barrett's esophagus. I'll be sticking to water and tea now. I absolutely love hot tea of almost any kind Coffee is going to be hard to give up though... Still waiting for biopsy results. I'm hoping to have them by Wednesday or Thursday. I'll keep you guys posted.

How are you feeling on the diet? That is more important than the test results.

[jessicalw28]

Haven't noticed any changes yet. I'll give it a good three month trial though.

[Korwyn]

I found out that I need to stop drinking soda anyway, because of my Barrett's esophagus. I'll be sticking to water and tea now. I absolutely love hot tea of almost any kind Coffee is going to be hard to give up though... Still waiting for biopsy results. I'm hoping to have them by Wednesday or Thursday. I'll keep you guys posted.

Watch out for the teas. We drink a lot of tea too, and when I was diagnosed I found an awful lot of them contain gluten. Then I had to quit soy and found that even more of them have soy lecithin! Loose leaf, unflavored teas are pretty safe, though I have found a few of the loose-leaf 'herbal' teas have barley or sprouted wheat in them.

[jessicalw28]

Watch out for the teas. We drink a lot of tea too, and when I was diagnosed I found an awful lot of them contain gluten. Then I had to quit soy and found that even more of them have soy lecithin! Loose leaf, unflavored teas are pretty safe, though I have found a few of the loose-leaf 'herbal' teas have barley or sprouted wheat in them.

Thanks for the advice. I don't know if I would have checked tea for gluten. You find it in the oddest places!

[jessicalw28]

My biopsy results came back yesterday. Negative. I am still convinced that gluten is the source of my problem and will give the diet a good three month trial.