Jump to content
  • Sign Up
0
kimann79

Wondering If I'm Gluten Sensitive

Rate this topic

Recommended Posts

I'll try not to draw my story out.

I've always had bizarre health issues and they all seem unrelated. When I was very, very young I began to get terribly mouth ulcers. I've always had digestive problems. Severe constipation as an infant and child. Bouts of diarrhea and constipation until my early twenties.

I was diagnosed with Graves disease at fifteen. They irradiated my thyroid.

I saw a doctor with my digestive complaints around 22 years old. They tested me for a host of issues and did a blood test for celiac disease which came back negative. They diagnosed me with IBS.

I was anemic for years and there was no explanation of it. After over a year of taking iron supplements I was no longer anemic, but still had very low ferritin levels.

I radically changed my diet and it seemed to help my stomach problems for a while.

Fast forward to a year ago when my thyroid symptoms spiraled out of control. I had been on synthroid for fifteen years and all of a sudden my chronic fatigue, fibro-pain, OCD and other issues became intolerable. Long story short, I began a course of self treatment, connected with a fabulous group of thyroid patient advocates, finally found a doctor that didn't freak out when I told him I was taking hydrocortisone for adrenal fatigue and learned many, many people with auto-immune disorders suffer from undiagnosed celiac disease.

Nearly every woman in my family has thyroid disease. My father has MS. My brother has type-1 diabetes.

I have read about enterolab, but we don't have insurance and it would be a sacrifice to budget for the testing. I'm wondering if I have reason to think I should take it anyway. I don't have awful digestive problems like a did eight years ago. Occasionally I am gassy, constipated or have loose stools, but nothing like it was. I do notice that when I eat something I don't normally (like whole grain cereal or unsprouted/fermented wheat products I have diarrhea or become constipated). I would like to have concrete proof that I cannot tolerate gluten in order to have the support of my husband and family because it would mean a difficult change in their diets- not just mine.

I'm concerned mainly because both my daughters have had digestive issues. My three year old, in particular, has always had trouble. As an infant she only had a BM every other week even though I nursed. When I introduced solid foods she immediately became constipated and was for over a year until I discovered the benefits of grinding my own flour and soaking it overnight. She still has bouts of constipation (so severe she has been to urgent care because the feces was so packed into her it pressed against her urethra and made her unable to urinate for nearly two days) which will last for a week or more where she doesn't have a BM and than she will have a few days of diarrhea. She has become terrified of going to the bathroom.

Please tell me what you think.

Do you think I should order this test for myself and my children?

I don't want to waste money, and I've read some things that raises red flags about enterolab, but I'm desperate to spare my children my fate and spare myself future problems.

Thanks!

Share this post


Link to post
Share on other sites

I'll try not to draw my story out.

I've always had bizarre health issues and they all seem unrelated. When I was very, very young I began to get terribly mouth ulcers. I've always had digestive problems. Severe constipation as an infant and child. Bouts of diarrhea and constipation until my early twenties.

I was diagnosed with Graves disease at fifteen. They irradiated my thyroid.

I saw a doctor with my digestive complaints around 22 years old. They tested me for a host of issues and did a blood test for celiac disease which came back negative. They diagnosed me with IBS.

I was anemic for years and there was no explanation of it. After over a year of taking iron supplements I was no longer anemic, but still had very low ferritin levels.

I radically changed my diet and it seemed to help my stomach problems for a while.

Fast forward to a year ago when my thyroid symptoms spiraled out of control. I had been on synthroid for fifteen years and all of a sudden my chronic fatigue, fibro-pain, OCD and other issues became intolerable. Long story short, I began a course of self treatment, connected with a fabulous group of thyroid patient advocates, finally found a doctor that didn't freak out when I told him I was taking hydrocortisone for adrenal fatigue and learned many, many people with auto-immune disorders suffer from undiagnosed celiac disease.

Nearly every woman in my family has thyroid disease. My father has MS. My brother has type-1 diabetes.

I have read about enterolab, but we don't have insurance and it would be a sacrifice to budget for the testing. I'm wondering if I have reason to think I should take it anyway. I don't have awful digestive problems like a did eight years ago. Occasionally I am gassy, constipated or have loose stools, but nothing like it was. I do notice that when I eat something I don't normally (like whole grain cereal or unsprouted/fermented wheat products I have diarrhea or become constipated). I would like to have concrete proof that I cannot tolerate gluten in order to have the support of my husband and family because it would mean a difficult change in their diets- not just mine.

I'm concerned mainly because both my daughters have had digestive issues. My three year old, in particular, has always had trouble. As an infant she only had a BM every other week even though I nursed. When I introduced solid foods she immediately became constipated and was for over a year until I discovered the benefits of grinding my own flour and soaking it overnight. She still has bouts of constipation (so severe she has been to urgent care because the feces was so packed into her it pressed against her urethra and made her unable to urinate for nearly two days) which will last for a week or more where she doesn't have a BM and than she will have a few days of diarrhea. She has become terrified of going to the bathroom.

Please tell me what you think.

Do you think I should order this test for myself and my children?

I don't want to waste money, and I've read some things that raises red flags about enterolab, but I'm desperate to spare my children my fate and spare myself future problems.

Thanks!

Hi, and welcome to the forum.

The first question I would ask you is what do you hope to accomplish with the Enterolab testing? It will not diagnose whether or not any of you have celiac disease. If you order the genetic testing it can tell you whether any or all of you carry recognized celiac genes. It can tell you, from the fecal fat score, how well your pancreas and digestive system is working in processing your food. It can tell you whether your body is making gliadin antibodies. It can tell you whether your body is making antibodies to soy and casein. But again, it cannot tell you whether or not you have celiac disease; only if you have a likelihood of having the disease.

Now many people who are gluten sensitive or intolerant do not test positive even on the celiac blood test, or show positive findings on the endoscopy. This does not mean that they should continue eating gluten. Anyone whose health improves when they stop eating gluten should do just that, stop eating gluten, regardless of what the test results say.

Your symptoms in your history are all consistent with gluten sensitivity/celiac disease, as you are probably aware from your reading. Digestive problems, anemia, thyroid, Graves disease; your family history of thyroid disease, MS, type-1 diabetes, children with bowel problems. All those things are leading you in the direction of celiac/gluten sensitivity. Probably the most informative test would be the genetic test, to show your husband (since this would appear from your post to be the problem) that the chances are that you have celiac/gluten intolerance. There are genes other than the celiac genes which are associated specifically with gluten intolerance, by the way.

I don't know if this has in any way helped you to clarify your thinking. My personal opinion is that you should all give totally gluten free a three month trial, if you can't afford the proper testing (bearing in mind that these tests could produce negatives or false negatives anyway). Your husband can eat gluten-free at home and eat gluten outside the home to his heart's content. If at the end of three months none of you has noticed any improvement, then it is time to re-evaluate.

Share this post


Link to post
Share on other sites

I'll try not to draw my story out.

I've always had bizarre health issues and they all seem unrelated. When I was very, very young I began to get terribly mouth ulcers. I've always had digestive problems. Severe constipation as an infant and child. Bouts of diarrhea and constipation until my early twenties.

I was diagnosed with Graves disease at fifteen. They irradiated my thyroid.

I saw a doctor with my digestive complaints around 22 years old. They tested me for a host of issues and did a blood test for celiac disease which came back negative. They diagnosed me with IBS.

I was anemic for years and there was no explanation of it. After over a year of taking iron supplements I was no longer anemic, but still had very low ferritin levels.

I radically changed my diet and it seemed to help my stomach problems for a while.

Fast forward to a year ago when my thyroid symptoms spiraled out of control. I had been on synthroid for fifteen years and all of a sudden my chronic fatigue, fibro-pain, OCD and other issues became intolerable. Long story short, I began a course of self treatment, connected with a fabulous group of thyroid patient advocates, finally found a doctor that didn't freak out when I told him I was taking hydrocortisone for adrenal fatigue and learned many, many people with auto-immune disorders suffer from undiagnosed celiac disease.

Nearly every woman in my family has thyroid disease. My father has MS. My brother has type-1 diabetes.

I have read about enterolab, but we don't have insurance and it would be a sacrifice to budget for the testing. I'm wondering if I have reason to think I should take it anyway. I don't have awful digestive problems like a did eight years ago. Occasionally I am gassy, constipated or have loose stools, but nothing like it was. I do notice that when I eat something I don't normally (like whole grain cereal or unsprouted/fermented wheat products I have diarrhea or become constipated). I would like to have concrete proof that I cannot tolerate gluten in order to have the support of my husband and family because it would mean a difficult change in their diets- not just mine.

I'm concerned mainly because both my daughters have had digestive issues. My three year old, in particular, has always had trouble. As an infant she only had a BM every other week even though I nursed. When I introduced solid foods she immediately became constipated and was for over a year until I discovered the benefits of grinding my own flour and soaking it overnight. She still has bouts of constipation (so severe she has been to urgent care because the feces was so packed into her it pressed against her urethra and made her unable to urinate for nearly two days) which will last for a week or more where she doesn't have a BM and than she will have a few days of diarrhea. She has become terrified of going to the bathroom.

Please tell me what you think.

Do you think I should order this test for myself and my children?

I don't want to waste money, and I've read some things that raises red flags about enterolab, but I'm desperate to spare my children my fate and spare myself future problems.

Thanks!

Oh! This is so sad! I am seriously ready to cry for you and your little ones. I definetly think that it is probably Celiac that you all have. Very, Very often blood tests come back negative when people actually do have celiac disease - even the biopsies have false negatives some times. It does seem that many poeple on this site have had good results with entero lab. I would say if you need proof go ahead and do the tests if you can come up with the money, but if you really can't manage it take your family off of gluten for a while (several months) and see what happens.

My experience with one of my daughters sounds very similar to yours. I had the blood test done on her, and it came back neg., but I took her off of gluten anyway and she has had drastic improvement.

I have Celiac disease, but it was not diagnosed for a long time and I am now having a lot of problems that have not yet resolved with taking gluten out of my diet. I would say go off of gluten as soon as you can, because if you don't treat it and you do have it you may end up with many more health problems.

I hope you and your family the very best in figuring out what is wrong and getting better soon!

Share this post


Link to post
Share on other sites

I guess I just want a definitive answer. I've been through the wringer this last year with my health and I want to know there is something I can actually do.

I know that may not be possible...or even probable.

My husband is very supportive and empathic, but I know he is going to have issues with me radically altering our diet (again!) without a reason. I'm not sure how he would respond to me doing it for the girls.

I also know that nobody in my family will take me seriously unless I have some medical data backing my suspicions that I may have a gluten intolerance. Honestly? I'm tired of feeling like a hypochondriac. I know something is wrong with my body, obviously from my history of thyroid disease, but I wonder if it is more than that.

I work really hard to eat nutrient dense, real foods, live healthy and exercise and I just feel like I shouldn't feel like and 80 year old woman at 30.

I was hoping the enterolab tests could confirm whether or not I likely have an issue with gluten and I could go about the business of treating the problem with a clear conscious that I wasn't putting my family through such a stringent diet for no reason.

I have nearly 200 pounds of grains (wheat, spelt, oats, etc.) in bins in my basement. They are used to eating fresh-milled and baked bread every day.

Maybe my only option is to just try it, but I'm not sure, because of my thyroid issues, that will result in major health improvements. The same symptoms associated with gluten intolerance are also associated with thyroid disease. Chronic fatigue, hair falling out, weight issues, fibro, anxiety issues, brain fog, skin problems, etc.

What if I do this and nothing changes but it isn't because I don't have a problem with gluten but because I do have a problem with my thyroid?

I'm not able to get a biopsy (the insurance issue) but is there any test I can actually afford that will determine whether or not I have this problem (and whether or not my daughter does)?

Thanks for your quick response.

I'm reading everything on this site and I find it fascinating.

Do you know if celiac disease/ gluten intolerance can cause thyroid disease?

Share this post


Link to post
Share on other sites

Oh! This is so sad! I am seriously ready to cry for you and your little ones.

Thank you for your compassion. It was so difficult to watch my babies go through what they did. When my first daughter was an infant she was so constipated my mother had to come over and pull (sorry, this is gross) the feces from her rectum. I sat in the dining room and cried. She said she had lots of practice with me when I was a baby.

That just can't be normal.

I wonder why their pediatrician never suggested testing them. I was in there constantly in the beginning because of the problem.

I'll have to talk to my husband about going gluten free. I still have so many questions and I'm sure he will as well.

Share this post


Link to post
Share on other sites

Do you know if celiac disease/ gluten intolerance can cause thyroid disease?

There is an extremely strong relationship between the two. You will find thousands of people on this forum with thyroid problems; I am one of them, although mine is fortunately minor. I had to talk my doctor into prescribing a low dose of thyroid medication for me because even though I tested normal, I was always freezing cold, wearing sweaters in the middle of summer, etc. Just that small dose made such a difference. People here have Hashimoto's Disease, Graves Disease, hypothyroid, hyperthyroid, thyroid cancer, thyroid nodules. IMHO anybody with thyroid issues should be tested for celiac/gluten intolerance. Unfortunately, doctors are not used to looking at the body as an integrated entity, but rather as separate diseases. "Go see the 'thyroid' in Room 6" "Go see the 'diabetes' in Room 5" :lol: with never a thought of possible celiac patients in Rooms 5 and 6!

Share this post


Link to post
Share on other sites

I experienced the same thing with both my daughters with the constipation - a mom's gotta do what a mom's gotta do! :rolleyes: My pediatricians never suggested testing my kids - I suggested it and when I was diagnosed (by biopsy) they finally listened to me. Although the blood tests came back negative for both my girls there has been a huge difference in them since taking gluten out of their diet (it took about a month for my kids - to see a big difference anyway), and my pediatrician is on board with it after she saw the improvement.

I really think that if money is an issue you might want to try and just do the diet. If gluten is the problem, then your kids will probably show a difference even if you don't for a while. It could take you longer because you have obviously had problems for many years and it takes time to heal from that. I have to keep telling myself the same thing, because like I said I am not doing a lot better, but I have seen a little improvement (you probably will too - make lists of all of your symptoms and see if any improve over a few months).

By the way, I always joke with my husband that I'm a 30 year old trapped in an 80 year old body. :)

I would suggest to look up lots of lists of symptoms of Celiac for children as well as adults and write down all the ones that you and your children have had and show your husband. I think you might be amazed that all your symptoms will fit with celiac/gluten intolerance and that it would totally be worth a shot at the diet change for a while.

My mom and sister have had thyroid issues for years and just since I was diagnosed they found out they have celiac too - their main symptom was the thyroid problems.

Share this post


Link to post
Share on other sites

ame='kimann79' date='17 April 2010 - 09:14 PM' timestamp='1271564092' post='605229']

I experienced the same thing with both my daughters with the constipation - a mom's gotta do what a mom's gotta do! :rolleyes: My pediatricians never suggested testing my kids - I suggested it and when I was diagnosed (by biopsy) they finally listened to me. Although the blood tests came back negative for both my girls there has been a huge difference in them since taking gluten out of their diet (it took about a month for my kids - to see a big difference anyway), and my pediatrician is on board with it after she saw the improvement.

I really think that if money is an issue you might want to try and just do the diet. If gluten is the problem, then your kids will probably show a difference even if you don't for a while. It could take you longer because you have obviously had problems for many years and it takes time to heal from that. I have to keep telling myself the same thing, because like I said I am not doing a lot better, but I have seen a little improvement (you probably will too - make lists of all of your symptoms and see if any improve over a few months).

How were you diagnosed? I'm wondering, since it's been eight years since I was last tested if I would show an intolerance now.

I think my husband is just scared of the implications of such a huge change in diet. I'm already impossible when going out to eat. He said today when we were looking for a place for lunch, "This is the way it's going to be the rest of our lives. The first seven years it was looking for vegetarian options in Southern Ohio and now it's finding real-food options."

I don't think he wants to add gluten free options to the list!

By the way, I always joke with my husband that I'm a 30 year old trapped in an 80 year old body. :)

I would suggest to look up lots of lists of symptoms of Celiac for children as well as adults and write down all the ones that you and your children have had and show your husband. I think you might be amazed that all your symptoms will fit with celiac/gluten intolerance and that it would totally be worth a shot at the diet change for a while.

My mom and sister have had thyroid issues for years and just since I was diagnosed they found out they have celiac too - their main symptom was the thyroid problems.

Share this post


Link to post
Share on other sites

I was diagnosed by biopsy. My doctor was so sure that I had Celiac that he thought we didn't need to bother with the blood tests and just wanted to do the biopsy. The blood test are often wrong - even the biopsies are wrong some times. I have heard (or read ;) ) that some people think that the gene test is the best one to do because then you know if you have the genetics to have celiac - I'm just not sure wether or not gluten intolerant people have the same genes.

It sounds like you feel like your husband is having such a hard time with all life changes that having a specific diet can entail that you feel you need concrete evidence to make you all feel better. You may not ever get that, other than going gluten free (although I think there is a good chance that if you test again it would be positive). One thing I thought of you could do is to look up all the possible side effect that can happen if you do not treat celiac/gluten intolerance. You could end up with many different kind of cancers, MS, permanent nerve damage, several other diseases including diabetes and rumatoid arthritis, and there are many many more that I can't think of at the moment. I for one am having a lot of trouble with my memory and my ablility to follow a thought to the end (this message is taking me at least 3 times as long to write as it would have before) and I have MS symptoms that I am being tested for this next week.

My biggest concern for you and your children is your future health and I think if you could show the possibilities that could occure to your husband he may be a little less hesitant about the change, because life could get a whole lot harder if some day your health dramatically declined. I had more mild of symptoms my whole life and then suddenly about 8 to 10 months ago my health declined a lot and I can hardly be alone with my children for even an hour - and that is on the good days. Now our life is much harder, because my husband has no choice but to stay with me and the kids - he has had to take over a lot of what I use to do as well as keep doing what he was doing to keep life from falling apart.

I have to tell you it is really hard and life seems very bleak at times. We are getting through it because we have to, but if I had a choice, I would have been gluten free long ago and saved us all this heart ache.

I don't want to push anything on you, I just wanted to share a little of what has happened to my family as a result of not being diagnosed soon enough. I also think that once you and your kids feel really good you will all be okay with the life style change because you will be able to enjoy every thing so much more.

Let me know about what you figure out. I hope for the best for you.

~Sarah

Share this post


Link to post
Share on other sites

Thanks Sarah for your thoughts. I'm so sorry you are feeling so poorly. My father was diagnosed with MS a few years ago and it has been difficult to watch this big (he's 6'5) strong, former police officer not be able to walk without trouble and have trouble with even the most basic daily tasks.

I hope your test for MS comes back negative.

I agree. My main concern is for my future health and the health of my children. I'm nearly convinced, if I am gluten intolerant, that it caused my thyroid disease which has dramatically decreased my quality of life. I am doing everything possible to protect my daughters thyroids- no soy, raw cruciferous veggies, steering clear of fluoride- and I hate to think they will develop problems despite all that.

My main reason for being tested is to have concrete evidence that I need to do this and do it for and with my children.

I told my husband the other day that I just want to know whyI've had so many health problems and this would be an answer.

I hate the not knowing.

If I were to do a gluten free diet would I have to be so strict as to have my own toaster, peanut butter, talk to wait staff at restaurants, etc?

How will I know it is helping and how long will it take before I see results?

My major complaints right now are my lack of energy, brain fog and my anxiety issues. All those things can be attributed to thyroid disease though.

Share this post


Link to post
Share on other sites

My major complaints right now are my lack of energy, brain fog and my anxiety issues. All those things can be attributed to thyroid disease though.

They can also be attributed to celiac, as can your thyroid problems in the first place.

Share this post


Link to post
Share on other sites

I just found my lab results from the first time I went to a GI complaining about digestive complaints. The tests all look normal. They were taken in 2003. The Gliadin IgA was 3.0 and the IgG was 3.1. The transglutaminase IgA was 0.9.The reticulin AB, IgA was <1.5. I have no idea what any of that means other than the numbers are all normal.

Does that mean I shouldn't pursue confirming gluten intolerance now? If I wasn't sensitive to gluten then I'm probably not now, right?

Share this post


Link to post
Share on other sites

Does that mean I shouldn't pursue confirming gluten intolerance now? If I wasn't sensitive to gluten then I'm probably not now, right?

Absolutely not. Celiac disease has a genetic factor, and then requires a trigger. That trigger can occur at any point in your life. You may have very different results today than you had in the past.

Share this post


Link to post
Share on other sites

I think I'm going to order the celiac panel through enterolab. Not the one including genetic testing. That's too expensive and I'm not sure it's necessary to know what genes I carry. Do any of you know if the test telling you whether or not there are gluten antibodies in your stool is fairly accurate? I know it can't diagnose celiac disease, but if my body is producing antibodies it's a sure bet I'm gluten intolerant, especially in light of my health history, right?

Do you think I could get away with just doing the $99 test for the antibodies?

I'm wondering if I should have my girls tested for that as well.

Share this post


Link to post
Share on other sites

I changed my mind. I've read nearly every thread on this board on enterolab and I'm not convinced it's legit. Now I'm left wondering what to do. I can't afford, without insurance, to request blood testing or a biopsy from my doctor. I'm not sure I will have the will power or determination to stay on the diet with no proof that it's necessary. This is so frustrating. I've had to deal with all these issues with thyroid disease and I'm tired of doctors and feeling like a hypochondriac. I'm just not sure what to do.

Share this post


Link to post
Share on other sites

Well, the first thing is to stop feeling like a hypochondriac. Doctors tend to do that to you - but you know your body and what you are describing sounds like something real.

If you really cannot afford to have the blood test, or the full enterolab test, I wish you would just trust your instincts and eliminate the gluten and see what happens. Can you develop the determination to stay with that if it works for you?

Share this post


Link to post
Share on other sites

I guess that's what I have to do. I actually don't have a problem being on a restricted diet. I've been, over the last fifteen years, a vegetarian, vegan, raw foodie, anorexic, and now I don't eat any processed food or sugar. So, yeah, I could easily stay on a gluten free diet. I think what worries me most is my ability to determine whether or not it is the diet that is helping my health or my thyroid getting under control.

How long would I have to do the diet before seeing results and what should I be expecting?

I guess that is a question that is difficult to answer. I'm sure everyone has different results.

Mushroom- do you think the enterolab test would accurately tell me whether or not I have a problem with gluten? I know it can't diagnose celiac disease, but from what I understand gluten intolerance is just as dangerous and unhealthy, correct?

Share this post


Link to post
Share on other sites

I changed my mind. I've read nearly every thread on this board on enterolab and I'm not convinced it's legit. Now I'm left wondering what to do. I can't afford, without insurance, to request blood testing or a biopsy from my doctor. I'm not sure I will have the will power or determination to stay on the diet with no proof that it's necessary. This is so frustrating. I've had to deal with all these issues with thyroid disease and I'm tired of doctors and feeling like a hypochondriac. I'm just not sure what to do.

Hey there, kimann79. I'm sorry you are frustrated - health problems seem to do just that - make life frustrating. I just want to say, for your encouragement, that it sounds like you are very health conciouse and have done a great job taking care of your family with the good food that you have put a lot of time and effort into making. Let that sink in - you love your family and are trying to do the very best that you can. You don't want anything to be a burden on them, and at the same time, to help them the most you need to feel the best you can too.

Can I make an observation? It seems to me from your posts that you are very stressed by wanting to make the right and perfect decision. (I say this because it sounds just like how I was prior to being diagnosed :P )

You can't know until you try some thing whether or not it will be the right road to go down - you can only make your best guess, and if it doesn't end up being right then you know you have to try something else. It sounds like that is what you have been doing and you are getting tired - I understand, I am in that place right now - but don't give up, you are getting closer with each trial and error and at some point - maybe sooner than you think - you will figure it all out.

I think that just for the fact that you have research celiac/gluten intolerance and think it sounds like it could be what is going on with you, makes it a very good possibility. That is how I found i had Celiac.

I think you should pursue it in what ever way you can.

If you really think you want evidence, then try to do every thing you can to get the medical testing done (cut back in areas that are not necessities for a while and save that money etc...)

If you find that there is no way that you can afford the testing then try the diet for a good three months (before you start write down all your symptoms and go back to that list) and see if any of your symptoms go away or get a bit better.

I don't think the diet would be too hard for you. It sound like you already don't eat packaged foods and make most your food your self. You will just have to change the grains that you use or take grains out of your diet for a time (a lot of people do best with no grains for the first month at least).

It seems to me that one really have only the two choices at this point. Tests or Diet change. Now you have to decide which it will be.

Oh, and on a side note, one thing that I have struggled with from having Celiac is that I have a really hard time making decisions and get over worried or anxious about them and even emotional too. If gluten is the problem it can really mess with your ability to handle things as well and think of them in a realistic way. - Just thought I would throw that in there - I don't know if you feel like it is that way for you.

Well, what are your thoughts? I hope this has helped a little anyway. Blessings to you!

Share this post


Link to post
Share on other sites

I guess that's what I have to do. I actually don't have a problem being on a restricted diet. I've been, over the last fifteen years, a vegetarian, vegan, raw foodie, anorexic, and now I don't eat any processed food or sugar. So, yeah, I could easily stay on a gluten free diet. I think what worries me most is my ability to determine whether or not it is the diet that is helping my health or my thyroid getting under control.

How long would I have to do the diet before seeing results and what should I be expecting?

I guess that is a question that is difficult to answer. I'm sure everyone has different results.

Mushroom- do you think the enterolab test would accurately tell me whether or not I have a problem with gluten? I know it can't diagnose celiac disease, but from what I understand gluten intolerance is just as dangerous and unhealthy, correct?

Whoops! I didn't see that there was a second page when I replied :D .

Anyway, I just thought I would add to this that if your thyroid did start working better after you go gluten free I would think that it was not a coincidence, but that taking gluten out of your diet made your thyroid able to heal and start working better.

Did I mention that my mom and sister who had to be on synthroid for years where able to go off of it - the doctors told them that they would have to take it for the rest of their lives. Now they don't need it at all!

Share this post


Link to post
Share on other sites

Assuming you give the "diet-test" enough time, it can be the most convincing standard there is. Compare getting yet another test result from some random doctor to getting a severely noticeable reaction from eating gluten again after being gluten-free for 2 months. I know for the first few weeks I was doubting what my doctor told me but each time I ended up accidently eating gluten it became more and more obvious how poisonous that stuff really was to me.

The potential weak point of the diet test is that it's often hard for people either to voluntarily stick with being 100% gluten free for long enough to get results or for them to be sure that they've eliminated all forms of gluten from their diet, medications and personal grooming products.

Share this post


Link to post
Share on other sites

Hey there, kimann79. I'm sorry you are frustrated - health problems seem to do just that - make life frustrating. I just want to say, for your encouragement, that it sounds like you are very health conciouse and have done a great job taking care of your family with the good food that you have put a lot of time and effort into making. Let that sink in - you love your family and are trying to do the very best that you can. You don't want anything to be a burden on them, and at the same time, to help them the most you need to feel the best you can too.

Can I make an observation? It seems to me from your posts that you are very stressed by wanting to make the right and perfect decision. (I say this because it sounds just like how I was prior to being diagnosed :P )

LOL. You hit the nail on the head! That's me in a nutshell. I was actually diagnosed with GAD and OCD after my first daughter was born, so yes, I have difficulty making decisions and tend towards perfectionism.

That's incredible that your relatives no longer needed synthroid. I've pretty much relegated myself to the fact that I'll be on it the rest of my life. I'm not sure if, even going gluten free, I will be able to get off it because I had Graves disease and they irradiated it.

It is VERY difficult for me to make even the simplest decision because I'm so afraid of making the wrong one or not getting all the right answers. I've spent the last two weeks spending every spare moment researching wallpaper and paint colors for my kitchen. At 1 am this morning my husband told me if I didn't make a decision that moment he was going to do it! :P

I really appreciate all of your thoughts and advice. I know I just need to bite the bullet and get the testing or go on a gluten free diet. I was hoping the enterolab would be a good choice because it is more affordable than blood work, but now I'm not so sure.

Share this post


Link to post
Share on other sites

Assuming you give the "diet-test" enough time, it can be the most convincing standard there is. Compare getting yet another test result from some random doctor to getting a severely noticeable reaction from eating gluten again after being gluten-free for 2 months. I know for the first few weeks I was doubting what my doctor told me but each time I ended up accidently eating gluten it became more and more obvious how poisonous that stuff really was to me.

The potential weak point of the diet test is that it's often hard for people either to voluntarily stick with being 100% gluten free for long enough to get results or for them to be sure that they've eliminated all forms of gluten from their diet, medications and personal grooming products.

How much time is enough?

Will I have to be as strict as someone diagnosed with celiac? For instance, will I have to buy a new toaster, watch out for cross-contamination, buy new cutting boards etc?

Maybe this sounds silly, but will my husband have to brush his teeth after eating a slice of pizza?

The more I read about it the more certain I am that I have it.

It explains so many of my health issues, not the least of which is my unexplained, nearly chronic low iron and anemia.

I just realized today that, while I wrote initially that I don't have intestinal problems anymore, that is not exactly true. They aren't as bad as they used to be, but I never have a normal BM. I'm either always constipated or have diarrhea. It's just become normal for me.

Isn't that sad? I hate that unwell has become my normal state of being.

Share this post


Link to post
Share on other sites

There are posters on here, especially Canadians, who have used Biocard. But really all it tells you is you are making antibodies. They recommend that a doctor confirm the diagnosis. I don't know how sensitive it is, i.e., what levels of antibodies need to be present for a positive test. Even with medical blood testing, unless the antibodies reach a certain threshold you are not considered to be celiac, and most people do make some antibodies, even those without celiac or gluten intolerance. At least the Enterolab testing gives you a reading of your AGA IGA antibodies.

If you are really wanting to do the right thing for your children, who are starting to show signs of celiac disease, and are not going to do the full testing, I believe that your whole family should go gluten free. And yes, I am afraid that you have to be just as strict as anyone else about eliminating all gluten. All it takes is ONE little sperm to make you pregnant, after all :lol: Think of it that way. One molecule of gluten will be reacted to. Now, not everyone is *that* sensitive, but that is the standard you have to aim for if you want valid results. And while it may seem hard, once you have things set up in your house it really is not that difficult. It is making the decision :D and getting started that is the hard part. Then it's just a matter of label reading. Since you already eat mostly whole foods, you will have to worry about personal care products, medications and supplements, and cooking without regular flour.

But I agree that you have your children's health to think of and I am sure you won't want them to go down the path you have followed. That's just my two cents worth.

Share this post


Link to post
Share on other sites

Even if you cut out 90% of the gluten in your diet you'll still be getting significantly affected by it which could completely skew the results of how you feel. So yes, in order to actually determine this you should try to get 100% gluten-free. I wouldn't rush out and buy all new kitchen equipment just yet. Buy a new cutting board and soak all of your metal cooking pans in either a strong isopropyl alcohol or everclear, scrub off all discoloration or imperfections on the surface of them, rinse and repeat. You can even just do this with your most versatile pan and use it for all of your meals for a month or so. Whatever you do, don't use your toaster. Since this can be a serious change try and get your husband to follow along with you on this gluten-free diet for support. Not only will it help you feel a little less alone on the change but it will also keep him from kissing you with gluten particles still in his mouth and could even cause him to get in better health too!

Depending on your age and the severity/location of the damage you could notice a change within a week or it could take up to 3 or more months. If you do have a gluten-sensitivity problem then the longer you stay gluten-free the more of a positive difference you'll notice and the more of a negative effect you'll experience when you do put ingest some gluten. It's definitely a steep learning process though as we are surrounded by hidden gluten in all aspects of our lives.

If you do experience negative effects from going gluten-free that's actually a sign that you need to STAY gluten-free. A great many of us experience both physical and mental withdrawal symptoms once we go gluten-free as our body attempts to gain a grasp on not being consistently poisoned. If you bear through this phase you'll come out in much better shape than ever.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
0

×