Is This Normal For Celiac?

[jdizzle]

Hi! I quit gluten just over a week ago. This is why I think I might be gluten intolerant: At first I though I was just lactose intolerant, then my doctor suggested it could be animal fats, so she asked me to observe how I react to a variety of food. Lactose made me feel horrid and bloated but in a different way to other foods. Frequently I'd enjoy eating dinner, feeling pretty normal, then a little late, often mere minutes later, I'd feel this urgent rumbling and dragging in my lower abdomen, and WOOSH! I'd only ever get a few second warning and have to bolt to the bathroom, where I'd usually end up staying for up to half an hour, struggling with a weird combination of diarrhea and constipation, (sorry to be graphic but) sort of having to push really hard, and then lots of gushing X/ ..followed by more pushing. Then I'd usually feel a bit gross afterward and have to lie down. This is been extremely common for me for a couple of years, and after eating lunch in town I'd always feel bloated afterward and have to sit down or sometimes shorten the trip and go home, which makes me really annoying to go shopping with. I went to a free youth doctor a couple of years back, and she said my stomach was stressed and that I should take a year off from university. I didn't at the time, but I took last year off. It hasn't made a difference to the digestive problems, but I think stress was one element at the time. I've also had really low energy for as long as I can remember, and I've been tall and thin with a bit of a pot belly, which I now realize could be gluten related. I've just had a gross feeling in my stomach and toilet problems for so long that I sort of got used to it, since people told me it's genetic because my Grandfather's always had a 'funny tummy'. But anyway! Just over a week ago, I went to a friend's house for dinner, it was just chicken, rice and vegetable. (I would usually have gravy). The next day I felt pretty good, unusually good, then at lunch I had a cup of soup with two big slices of bread. Immediately afterward, I started feeling extremely tired and weak. I remained horizontal til bedtime. The next day, aggressive diarrhea. It was a bit of a 'eureka!' moment. The gluten tie was so distinctly obvious by now, I just stopped eating it completely. It suddenly made sense that I always had to sprint to the toilet on friday nights! (pizza night) and why I also got the runs from malty drinks like cola and lemon lime and bitters. (Sorry really didn't realize this post would go so long) The first couple of days I remember literally bouncing and skipping up the stairs, I had so much energy! and I wasn't constantly aware of my stomach's existence! And then everything went to crap. Since then I have been smacked with fatigue and a gross gassy belly. It's not as bad today as yesterday, when I could hardly sit up, but it comes and goes unpredictably! I'm eating lots of fruit, and veg! I'm only eating dark chocolate now, but my energy is fluctuating crazily! Is this bad? It's like I'm on a roller coaster, An hour ago I wouldn't have been able to sit here long enough to type this. Please give any insights from your knowledge or personal experience that you feel may be helpful to me. I've got a doctors appointment, but it's in 5 days, and I'm concerned about whether or not I've done the right thing quitting gluten. I don't want to eat it again though! I haven't had the runs in over 7 days! and I'm spending heaps less time on the toilet in general. I'm hoping this fatigue is normal, and that it goes away soon. It's potentially unrelated but since quitting gluten I've also been experiencing some palpitations, constant gas and a little incontinence! Thanks.

[mushroom]

Hello, and welcome. I think you have probably found the right place to get some help.

Unfortunately, I do have some slightly bad news for you -- if you wait for 12 days after you have quit eating gluten before yhou have any celiac testing, the testing will most likely be negative. If you were to have the testing today it would still be okay, bu in the absence of gluten the antibodies start to disappear and that is what the blood test is looking for. If you go back on gluten right away, you will probably still be okay for testing and I know that isn't a prospect you would be looking forward to... It depends on whether or not you need the official rather than the self-diagnosis.

The feeling good after quitting and then relapsing is a very normal reaction. Most people go through a withdrawal period of 2-3 weeks or so when quitting gluten where they feel terrible and the symptoms can be very variable. Remember, you have a damaged body and it needs to heal before you are going to be better. Some days will be better than others. You should probably ease off a bit on the fruit because it is very high in sugar and that could be another problem. The palpitations are probably coming from the gassiness and bloating.

If you can make it for another five days eating gluten I would strongly advise it so that your testing is not invalidated by lack of gluten. Of course, it may end up being longer than that because doctors still like to do the biopsy for confirmation of any positive blood work, although you can refuse this test, it's up to you. More and more, doctors (and even Dr. Fasano, the god of celiac) are coming to realize that the biopsy is really not that necessary and many are pepared to give you a diagnosis if you have the symptoms, positive blood work, respond to the diet. Some like to do the gene testing for confirmation - it is not diagnostic but suggestive that you have the genetic propensity for celiac. Now the diagnosis may not be an important part for you in the scheme of things, it may be that all you want is just to feel better, and I think you have found that you can feel better and even though you are going through detox/withrawal you are still feeling better than when you were eating a full gluten diet.

So ultimately the decision is up to you how you wish to proceed. But I would be pretty confident that gluten is your problem, even if the testing is negative. Doctors are also starting to recognize a separate entity known as non-celiac gluten intolerance, and that is why the availability of gluten free products is so much greater than previously --all these non-celiac gluten intolerants are just saying I don't care about the diagnosis, gluten is bad for me and I'm not going to eat it any more. Of course there are the faddists, and the celebrities, and the people who do it for weight loss but we won't go there. There are enough genuine gluten intolerants around without having to include the faddists.

[jdizzle]

Hello, and welcome. I think you have probably found the right place to get some help.

Unfortunately, I do have some slightly bad news for you -- if you wait for 12 days after you have quit eating gluten before yhou have any celiac testing, the testing will most likely be negative. If you were to have the testing today it would still be okay, bu in the absence of gluten the antibodies start to disappear and that is what the blood test is looking for. If you go back on gluten right away, you will probably still be okay for testing and I know that isn't a prospect you would be looking forward to... It depends on whether or not you need the official rather than the self-diagnosis.

The feeling good after quitting and then relapsing is a very normal reaction. Most people go through a withdrawal period of 2-3 weeks or so when quitting gluten where they feel terrible and the symptoms can be very variable. Remember, you have a damaged body and it needs to heal before you are going to be better. Some days will be better than others. You should probably ease off a bit on the fruit because it is very high in sugar and that could be another problem. The palpitations are probably coming from the gassiness and bloating.

If you can make it for another five days eating gluten I would strongly advise it so that your testing is not invalidated by lack of gluten. Of course, it may end up being longer than that because doctors still like to do the biopsy for confirmation of any positive blood work, although you can refuse this test, it's up to you. More and more, doctors (and even Dr. Fasano, the god of celiac) are coming to realize that the biopsy is really not that necessary and many are pepared to give you a diagnosis if you have the symptoms, positive blood work, respond to the diet. Some like to do the gene testing for confirmation - it is not diagnostic but suggestive that you have the genetic propensity for celiac. Now the diagnosis may not be an important part for you in the scheme of things, it may be that all you want is just to feel better, and I think you have found that you can feel better and even though you are going through detox/withrawal you are still feeling better than when you were eating a full gluten diet.

So ultimately the decision is up to you how you wish to proceed. But I would be pretty confident that gluten is your problem, even if the testing is negative. Doctors are also starting to recognize a separate entity known as non-celiac gluten intolerance, and that is why the availability of gluten free products is so much greater than previously --all these non-celiac gluten intolerants are just saying I don't care about the diagnosis, gluten is bad for me and I'm not going to eat it any more. Of course there are the faddists, and the celebrities, and the people who do it for weight loss but we won't go there. There are enough genuine gluten intolerants around without having to include the faddists.

Thanks for your response! It's encouraging to get confirmation that a gluten allergy is most likely the problem, and that feeling crappy right now is normal. I will have to try to think of other things than fruit, because I saw it as safe I've been shoving it down! I noticed in your signature that a couple of years after quitting gluten you became lactose tolerant, I really hope that happens to me!

[Bubba's Mom]

Mushroom gave you very good advice in regards to the testing. I just thought I'd add..start keeping a log of what you eat. Note any symptoms you have. Some of us find we have more than one intolerance, and since food intolerances can have delayed reactions it helps sort out what you may react to?

Many of us have problems with lactose in milk at first. It might be a good idea to stop using milk for a bit too?