Changes In A Suspected Celiac Gone Gluten-Free

[Narziss]

hey Everyone,

The following is an extended description leading to these two questions, but for reasons of conciseness and time, I'll also provide my two questions at the beginning in case you can provide some simple answers but don't have the time to read through this whole, long message.

Question 1: Having gone gluten-free, how many weeks can pass before a biopsy test becomes useless for determining celiac disease? -- I've had my most severe symptoms (chronic diarrhea and recurring headaches) for 2.5 months prior to having gone gluten-free.

Question 2: If I was having yellow and pale stools intermixed with recurring diarrhea while eating gluten, would it then be completely abnormal to swing completely in the other direction a few weeks after having gone gluten-free? I'm asking this because I've progressively developed healthy brown stool, but my stool kept going in this direction and now I'm at the point where I feel abdominal pain and lots of thirst, and if it goes any more in this direction, I feel like I'll end up with severe constipation unless my body balances out soon.

Extended discussion:

I am new to these forums, and I've been eagerly across the internet these past few months researching many diseases and symptoms to come to the suspicion that I may have Celiac disease. Unfortunately, it seems to take quite a bit of a nudge to get my doctor to give me a biopsy, which he has yet to do, and has only given me two blood tests. The first, IgA, actually showed that I had lower than normal levels of IgA and not higher than normal levels, which would have been indicative of Celiac disease. He requested this test about a month ago, and since I was having severe headaches and chronic diarrhea, being willing to try anything for some relief, I went gluten-free of my own accord about a month ago. Two weeks later, when I got the IgA test result, he said that he wanted to check my tissue transglutaminase g. It's been about two weeks, and I am waiting for the result.

My first question: once this lab comes back, and assuming that I've gone gluten-free for about 6 weeks before a biopsy is done, would it be useless to give me a biopsy after six weeks of having gone gluten-free? Would it be better if I consumed some gluten prior to the biopsy?--or is six weeks recent enough to still retain some damage that would be detectable in a biopsy? I am 23 years old and have really only had severe symptoms for about 2.5 months.

Also, I suspect that I am a celiac because my stool and way of feeling has radically changed since I've gone gluten-free. I'm really annoyed that doctors are so eager to give you an SSRI or other anti-anxiety medications when you come in with some weird symptoms. Having gone gluten-free, I've felt calmer everyday since, though it has been a very slow, gradual change. Each day that passess I feel more normal and less like a paranoid hypochondriac.

So why did I become so anxious?--because I developed constant diarrhea and headaches of all sorts that lasted 2.5 months! The annoying thing is going in to see several doctors that all just send you home with either an SSRI prescription or just a suggestion to do some more meditation--Don't they realize that I've missed nearly half of my classes this spring semester and had to drop many classes on my schedule and have gone below the minimum amount of units to be a full time student because this anxiety and headaches have been absolutely terrible?...quite frustrating.

My stool alternated between being yellow, pale, or just being yellow diarrhea each day for 2.5 months. I also could not go a single day without a severe headache of some sort. I had every sort of headache between December 2009 and February 2010. Also, I randomly became lactose intolerant even though I've never previously had a problem with whole milk!

Then I went gluten-free in early February, and I immediately started feeling better. My stool started getting firmer, my diarrhea went away, and the stool quality started going from soft and yellow to dark brown. Also, my headaches started decreasing in severity and frequency.

Now, I'm on week four of having gone gluten-free. My stool in the last few days has been the healthiest in the last six months, and my headaches have gotten really light and infrequent. Also, I'm not experiencing the severe fatigue that I was getting in the last few months, and my anxiety is much, much lower and more manageable now. I'm really happy with these changes, and I look forward to feeling better. I'm relieved to have found an answer to my problematic symptoms and a solution: a gluten-free diet.

However, I nevertheless want to be given a biopsy soon, if this is still possible and if having gone gluten-free for 4 weeks so far, probably 6 weeks once I get an appointment, doesn't severely affect the biopsy result. I want the biopsy so that I can have a much stronger confirmation--although I'm fairly certain that my problem is dietary--perhaps I was allergic to something other than gluten that I inadvendently cut out when I went gluten-free. Whatever the case, I really do NOT want to have to consume gluten prior to the biopsy because I really can't go back, even momentarily, to that nightmare horrorshow of constant headaches.

I've been feeling better, but I do have a second question: is swinging over to a really firm stool with abdominal pain abnormal when recovering from celiac disease?

As I said, my stool has gone from chronically recurring yellow diarrhea to firm brown stool in the last four weeks (since having gone gluten-free). However, in the last two days, my stool has become really, really firm and very dark brown, and I've gotten lots of abdominal pain (not severe pain, but just painful discomfort). Also, I've been feeling incredibly thirsty in the past 24 hours, since the abdominal pain has arisen. Does this sound like a normal recovering?--for example, was I perhaps severely struggling to retain salts while having diarrhea and eating gluten, that now I'm swinging back completely in the other direction? Will it then take some time for my body to establish a middle ground?

Thanks ahead for your support and advice. Thank you so much for your help and reading this.

[mushroom]

hey Everyone,

The following is an extended description leading to these two questions, but for reasons of conciseness and time, I'll also provide my two questions at the beginning in case you can provide some simple answers but don't have the time to read through this whole, long message.

Question 1: Having gone gluten-free, how many weeks can pass before a biopsy test becomes useless for determining celiac disease? -- I've had my most severe symptoms (chronic diarrhea and recurring headaches) for 2.5 months prior to having gone gluten-free.

Question 2: If I was having yellow and pale stools intermixed with recurring diarrhea while eating gluten, would it then be completely abnormal to swing completely in the other direction a few weeks after having gone gluten-free? I'm asking this because I've progressively developed healthy brown stool, but my stool kept going in this direction and now I'm at the point where I feel abdominal pain and lots of thirst, and if it goes any more in this direction, I feel like I'll end up with severe constipation unless my body balances out soon.

Hello, and welcome to the board.

I have read your entire post, and will respond to the questions.

1. There is no hard and fast rule about how many weeks can elapse for a biopsy to be accurate, as each person heals at a different rate and has a different level of villous damage. In order to get the most accurate result you should, of course, be eating gluten right up to the time of biopsy. Assuming a biopsy date of six weeks after elimination of gluten, I would think you would be extraordinarily lucky to get a positive test. Same with blood work. Even the two week interval before the tissue transglutaminase test could well have interfered with that result, whatever it is.

1.1 When you talk about your IGA test being low, was that a total serum IGA or an Anti-Gliadin IGA, if you know? And I must assume it was the latter because the other makes little sense unless run in conjenction with other tests. If it were a serum IGA and were low that low result would invalidate the other serum testing because you are a low antibody producer. That is a test that is normally run as a control on the other celiac panel tests. (There are others besides the two that have been taken.)

2. Many celiacs while still eating gluten range between diarrhea and constipation, so no, it is not at all unusual for you to swing around to constipation. But you must keep it in check. Perhaps you need to increase your fluid intake? Or perhaps, as you say, your body has just overreacted in balancing this out. I would not be overly concerned unless it continued.

As far as diagnosis is concerned, if you are adamant about no more gluten, your other option is to do the stool testing through Enterolab which can be ordered online. But again, this test only measures the anti-gliadin IGA, which stays in the intestine a lot longer, up to six months, than in the blood. It can also test for other food sensitivities, and test for whether or not you carry the major genes predisposing to celiac or gluten intolerance. While not diagnostic, this can show whether it is likely that this is your problem.

Which leads to the other aspect of testing: it is possible to have all symptoms of celiac, and yet not be celiac. You may be latent celiac (not yet diagnosable) or gluten sensitive or gluten intolerant. So a negative blood test and negative biopsy do not say, automatically, go ahead and eat gluten, you have no problem. Your problems and symptoms can be just as serious as a non-celiac and also require the gluten-free diet.

Let us know your further results and how things go with your GI.

[Narziss]

Thanks for your reply!

Just out of curiosity, is EnteroLab the only way to get the stool test?

You said, "Many celiacs while still eating gluten range between diarrhea and constipation, so no, it is not at all unusual for you to swing around to constipation."

However, I wanted to specify that I had diarrhea for 2.5 months and yellow stools, and now after going gluten-free for four weeks I've developed brown stools but also some constipation as of the last two days with some abdominal pain (and I'm pretty sure I'm gluten-free since I've obsessively checked every label and looked up many products and have resorted to eating brown rice primarily).

I wonder if my intestines just haven't been used to processing firm stool, and perhaps this is the cause of my pain. Nevertheless, you are right, I will check up with a doctor in the next couple days.

[mushroom]

No, I believe your doctor can order stool/saliva IGA and stool/saliva and/or serum genetic testing through Prometheus or Qwest Laboratories.

My phraseology in reply to your constipation question was a little limiting. Posters often report marked changes in bowel habits after going gluten free, some satisfactory as yours initially was, others not so satisfactory. It does take your system a while to settle down and adjust to the new regime, usually I would expect it to take two to three months of healing time. Are you eating substitute gluten-free grains?, as your digestive system sometimes does not know how to handle these very well, not being used to them and not functioning at its best at the moment.

[CeliacDiagosed-50]

CeliacDiagnosed@50, Recently diagnosed after one of my children had miscarriage and tested positive for Celiac:

I also went on the gluten-free diet 6 mos prior to Diagnosis went off of gluten-free Diet to show results in tests. In Europe it is widely tested compared to USA which is far behind in the belief and recognition of Celiac Disease. I am not a clinician but am only going to suggest to you some information you may want to seek out via the internet regarding the prevalence of the disease worldwide. It is found widely in Europe. In Italy all children are tested. (Pasta and bread are a staple food there) It is reported that 1 out of 300 people Ireland are diagnosed with it as well. Asian countries in the past have not been widely diagnosed based on the fact that they mainly consume rice and not semolina or wheat. I live in Massachusetts and went to a Boston Hospital (Beth Israel Deaconess) because that is where my daughter was sent for nutritional/dietary counseling after her positive diagnosis.

hey Everyone,

The following is an extended description leading to these two questions, but for reasons of conciseness and time, I'll also provide my two questions at the beginning in case you can provide some simple answers but don't have the time to read through this whole, long message.

Question 1: Having gone gluten-free, how many weeks can pass before a biopsy test becomes useless for determining celiac disease? -- I've had my most severe symptoms (chronic diarrhea and recurring headaches) for 2.5 months prior to having gone gluten-free.

Question 2: If I was having yellow and pale stools intermixed with recurring diarrhea while eating gluten, would it then be completely abnormal to swing completely in the other direction a few weeks after having gone gluten-free? I'm asking this because I've progressively developed healthy brown stool, but my stool kept going in this direction and now I'm at the point where I feel abdominal pain and lots of thirst, and if it goes any more in this direction, I feel like I'll end up with severe constipation unless my body balances out soon.

Extended discussion:

I am new to these forums, and I've been eagerly across the internet these past few months researching many diseases and symptoms to come to the suspicion that I may have Celiac disease. Unfortunately, it seems to take quite a bit of a nudge to get my doctor to give me a biopsy, which he has yet to do, and has only given me two blood tests. The first, IgA, actually showed that I had lower than normal levels of IgA and not higher than normal levels, which would have been indicative of Celiac disease. He requested this test about a month ago, and since I was having severe headaches and chronic diarrhea, being willing to try anything for some relief, I went gluten-free of my own accord about a month ago. Two weeks later, when I got the IgA test result, he said that he wanted to check my tissue transglutaminase g. It's been about two weeks, and I am waiting for the result.

My first question: once this lab comes back, and assuming that I've gone gluten-free for about 6 weeks before a biopsy is done, would it be useless to give me a biopsy after six weeks of having gone gluten-free? Would it be better if I consumed some gluten prior to the biopsy?--or is six weeks recent enough to still retain some damage that would be detectable in a biopsy? I am 23 years old and have really only had severe symptoms for about 2.5 months.

Also, I suspect that I am a celiac because my stool and way of feeling has radically changed since I've gone gluten-free. I'm really annoyed that doctors are so eager to give you an SSRI or other anti-anxiety medications when you come in with some weird symptoms. Having gone gluten-free, I've felt calmer everyday since, though it has been a very slow, gradual change. Each day that passess I feel more normal and less like a paranoid hypochondriac.

So why did I become so anxious?--because I developed constant diarrhea and headaches of all sorts that lasted 2.5 months! The annoying thing is going in to see several doctors that all just send you home with either an SSRI prescription or just a suggestion to do some more meditation--Don't they realize that I've missed nearly half of my classes this spring semester and had to drop many classes on my schedule and have gone below the minimum amount of units to be a full time student because this anxiety and headaches have been absolutely terrible?...quite frustrating.

My stool alternated between being yellow, pale, or just being yellow diarrhea each day for 2.5 months. I also could not go a single day without a severe headache of some sort. I had every sort of headache between December 2009 and February 2010. Also, I randomly became lactose intolerant even though I've never previously had a problem with whole milk!

Then I went gluten-free in early February, and I immediately started feeling better. My stool started getting firmer, my diarrhea went away, and the stool quality started going from soft and yellow to dark brown. Also, my headaches started decreasing in severity and frequency.

Now, I'm on week four of having gone gluten-free. My stool in the last few days has been the healthiest in the last six months, and my headaches have gotten really light and infrequent. Also, I'm not experiencing the severe fatigue that I was getting in the last few months, and my anxiety is much, much lower and more manageable now. I'm really happy with these changes, and I look forward to feeling better. I'm relieved to have found an answer to my problematic symptoms and a solution: a gluten-free diet.

However, I nevertheless want to be given a biopsy soon, if this is still possible and if having gone gluten-free for 4 weeks so far, probably 6 weeks once I get an appointment, doesn't severely affect the biopsy result. I want the biopsy so that I can have a much stronger confirmation--although I'm fairly certain that my problem is dietary--perhaps I was allergic to something other than gluten that I inadvendently cut out when I went gluten-free. Whatever the case, I really do NOT want to have to consume gluten prior to the biopsy because I really can't go back, even momentarily, to that nightmare horrorshow of constant headaches.

I've been feeling better, but I do have a second question: is swinging over to a really firm stool with abdominal pain abnormal when recovering from celiac disease?

As I said, my stool has gone from chronically recurring yellow diarrhea to firm brown stool in the last four weeks (since having gone gluten-free). However, in the last two days, my stool has become really, really firm and very dark brown, and I've gotten lots of abdominal pain (not severe pain, but just painful discomfort). Also, I've been feeling incredibly thirsty in the past 24 hours, since the abdominal pain has arisen. Does this sound like a normal recovering?--for example, was I perhaps severely struggling to retain salts while having diarrhea and eating gluten, that now I'm swinging back completely in the other direction? Will it then take some time for my body to establish a middle ground?

Thanks ahead for your support and advice. Thank you so much for your help and reading this.