Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

Archived

This topic is now archived and is closed to further replies.

Recommended Posts

My first post on this forum... hoping for some advice.

A couple of years ago, I started having pretty severe diarrhea and stomach cramps most days. I finally went to the doctor, who diagnosed IBS and told me to take fiber pills and a probiotic. The probiotic was a waste of $30. I took the fiber pills for several months, even as my symptoms got worse, until I forgot them before going on a trip. My stomach was still painful, especially in the morning, but I was at least able to make it to the bathroom without worrying that I wouldn't get there in time. All along, I went with the IBS diagnosis, so I even quit my stressful job, thinking that my symptoms would improve. In fact, they got worse. It's to the point now that I can't leave the house without taking a maximum dose of immodium. I can barely eat and suspect malabsorption when I do -- I am not going to get into details as I suspect most of you know what I mean. My clothes are hanging off me. My doctor was less than helpful, telling me that I can just take immodium -- that it's not habit forming or anything. (rolling eyes)

I finally convinced her to give me the celiac panel. The nurse called me and said that my IGG number was 31 (on the lab's scale, 0-19 was considered normal) and that the doctor wanted to do an endoscopy. I agreed and had the biopsy done the next day. I waited a week for my results and the nurse called back and said that I had no signs of a gluten allergy. I asked what about my symptoms? She seemed surprised I even wanted a follow up. I do want to see a doctor for a second opinion but it takes eight to ten weeks to see a GI doctor in my area and I don't want to suffer for that long.

Should I try the gluten-free diet? It just seems so completely overwhelming. I work and go to school nights and most of my meals are takeout. I don't know where to even start. Is it possible the IGG result doesn't mean celiac? My doctor implied that it did, but once the biopsy came back clean I was on my own. I have a personal history of a big illness being misdiagnosed and I don't trust doctors without a grain of salt, but the thought of never having gluten foods again scares me.

Any advice?

Share this post


Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


Welcome to the board - I think we can help you out a bit here. First thing to do is to get a copy of the lab reports for both the blood tests and the biopsy. There are some pretty smart people around here who are good at analysing test results. While most of us are not medical professionals, we do have some on here. So feel free to post the report results with the ranges the lab uses.

Second - you have approx. 30 feet of small intestine and it is possible to examine only a small part of it. Damage to the villi in the small intestine is often patchy and it is common for the biopsies to miss the damaged parts. Or, you may not yet have visible damage in the intestinal tract or they may not have taken enough samples. Positive blood work and negative biopsy is not uncommon. In fact it is not uncommon for those with gluten intolerance to test negative on both tests and still be helped by the gluten free diet. So yes, if they have done their testing, I would give the gluten free diet a good three-month trial, but you do have to be strict with it - no cheating!!! - for it to work for you, otherwise you are still doing damage to your body.

Now would be the time to start taking probiotics to heal the damage. They would not have done you any good years ago while you were still consuming gluten, but you do need now to repopulate your gut with good bacteria to help it along. Make sure it is gluten free. Once you make the decision to give up gluten, it is a bit like smoking. You may have a few withdrawal symptoms (or you may not) but you just KNOW you can never eat it again and eventually you will come to think of it, like we do, as 'rat poison'. Sometimes I feel positively nauseated looking at a big messy plate of glutenoid food. :lol: It takes a while to learn all the sources of hidden gluten, but we are here to help. You will make mistakes at first, and you will pay for them because (unfortunately) once you stop eating gluten and start to recover from it the gluten reactions can become worse. You body cries out, "What, I have to make these damned antibodies again?!!" and goes into overdrive to try to get rid of the gluten. That's why I say, no cheating. While a mistake or two won't hurt that much, every bit of gluten does count and you want to be rid of it. There are lots of threads on here about how to rid yourself of gluten - check around and do some reading because most things have been covered. If there's a question you can't find an answer to, fire away.

Good luck on your new gluten free life. It won't be long before you're an old pro :)


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

Share this post


Link to post
Share on other sites

Welcome to the board - I think we can help you out a bit here. First thing to do is to get a copy of the lab reports for both the blood tests and the biopsy. There are some pretty smart people around here who are good at analysing test results. While most of us are not medical professionals, we do have some on here. So feel free to post the report results with the ranges the lab uses.

Second - you have approx. 30 feet of small intestine and it is possible to examine only a small part of it. Damage to the villi in the small intestine is often patchy and it is common for the biopsies to miss the damaged parts. Or, you may not yet have visible damage in the intestinal tract or they may not have taken enough samples. Positive blood work and negative biopsy is not uncommon. In fact it is not uncommon for those with gluten intolerance to test negative on both tests and still be helped by the gluten free diet. So yes, if they have done their testing, I would give the gluten free diet a good three-month trial, but you do have to be strict with it - no cheating!!! - for it to work for you, otherwise you are still doing damage to your body.

Now would be the time to start taking probiotics to heal the damage. They would not have done you any good years ago while you were still consuming gluten, but you do need now to repopulate your gut with good bacteria to help it along. Make sure it is gluten free. Once you make the decision to give up gluten, it is a bit like smoking. You may have a few withdrawal symptoms (or you may not) but you just KNOW you can never eat it again and eventually you will come to think of it, like we do, as 'rat poison'. Sometimes I feel positively nauseated looking at a big messy plate of glutenoid food. :lol: It takes a while to learn all the sources of hidden gluten, but we are here to help. You will make mistakes at first, and you will pay for them because (unfortunately) once you stop eating gluten and start to recover from it the gluten reactions can become worse. You body cries out, "What, I have to make these damned antibodies again?!!" and goes into overdrive to try to get rid of the gluten. That's why I say, no cheating. While a mistake or two won't hurt that much, every bit of gluten does count and you want to be rid of it. There are lots of threads on here about how to rid yourself of gluten - check around and do some reading because most things have been covered. If there's a question you can't find an answer to, fire away.

Good luck on your new gluten free life. It won't be long before you're an old pro :)

Thanks! I will try to get the lab results but I went gluten-free yesterday. This morning, I woke up without debilitating stomach cramps for the first time in months. Is it possible for me to feel better this quickly, or is it the placebo effect? I will say that I am EXHAUSTED, which I've read is a side effect of going gluten-free, too.

Share this post


Link to post
Share on other sites

Thanks! I will try to get the lab results but I went gluten-free yesterday. This morning, I woke up without debilitating stomach cramps for the first time in months. Is it possible for me to feel better this quickly, or is it the placebo effect? I will say that I am EXHAUSTED, which I've read is a side effect of going gluten-free, too.

Yes, it does sound like you have begun your recovery :) It is possible to note positive effects right away. Isn't that wonderful? :D


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

Share this post


Link to post
Share on other sites

Thanks! I will try to get the lab results but I went gluten-free yesterday. This morning, I woke up without debilitating stomach cramps for the first time in months. Is it possible for me to feel better this quickly, or is it the placebo effect? I will say that I am EXHAUSTED, which I've read is a side effect of going gluten-free, too.

It is possible to get relief quickly. It also isn't unusual to have some ups and down for the first couple months so hang in there if you still have some occasional setbacks. The exhaustion is normal also, many of us go through a bit of withdrawl when we first start the diet and that will pass. The withdrawl may make you a bit more emotional also but that also will go away shortly if it happens. Stick with as much whole unprocessed food as you can to speed healing and cut down on CC risk. Read as much as you can here and ask any questions you need to.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

Share this post


Link to post
Share on other sites