Questions About Symptoms..confused

[Bon359]

Hi I have some questions about symptoms I have been having and wonder if anyone can shed some light on this. I was dx'd with hypothriodism about 9 years ago. I have been on Synthriod ever since. I also had severe problems with fibriods. One bout was after my 1st child was born and the 2nd bout was after my 2nd child was born. The last bout got so bad that I was bleeding for a whole month. I had the fibriod removed and have had no bleeding problems since. Before I went in for the surgery for that they told me I was slightly anemic,but that was usual with women with bleeding problems from fibriods. After the surgery I went on iron for a couple of months and my bloodwork was normal.

I was also loosing hair(not clumps just some sheding in the shower) for about a year before that and started to research that. I found out that your feritan level(blood stores)being low could cause that. So I had that checked and mine was 7(normal is 50-100's). Again they put me on iron and within a few months it doubled to 14. Than after about 8 months on it went up to 50 which is on the low end of normal(my hair is still coming out some in the shower).

I stopped taking the iron because I was starting to feel very slight indigestion when I took it around midafternoon and it was from that. The indigestion was geetting worse so I went to the Dr. and he said it was nothing. Than I started getting this thing that when I would eat the food felt stuck and wasn't digesting. That subsided now I have just a gassy,bloating feeling. It feels like trapped gas in my upper intestines. I also feel like a soreness in my stomach. I went to a gastro Dr. and he thought it was my gallbladder or ulcer. Although I have no burning,heartburn,reflux,only gassiness. I had a sonogram which was fine. He wanted to do an endoscope but I chickened out and asked for an upper GI series,which I'm still waiting for the results for.

Also around the time I was dx'd with thryriod or it could have been before(it's been so long) I started getting bowel changes. Sometimes D,but mostly soft bowel movements a few times each morning. This turned into normal for me for so many years I didn't think twice about it. When I do go good it's good but most of the itme it's on the loose,soft side(sorry for the graphic details). I never had much gas except for in the morning and than that's if for the day. I thought it was IBS because my mother was Dx'd with that.

My mother,sister,and brother are all very heavy(and have always been) while I was always very thin. Now I am about 133 lbs. and 5'3". This is the heaviset I have been in my life. My mother,and sister were dx'd with a hital hernia and my sister has GERD and hypothryiodism. She was badly colicky as a baby and was always small. She's 4'11" now. My mother is very gassy and burps a lot. Both of them have lost hair also. My brother has a bad stomach also and has type II Diabetes from being overweight. The 3 of them have minor excema.

No one,including me seems to be bothered outright my wheat. In otherwords it doesn't set us off right after we eat it. My mother has a bad stomach after red meat sometimes. I don't know anyone in my family that was dx'd with Celiac.

I'm perimenopausal now also,so I thought that some of the things I'm going through could be that. And I have always had some anxiety which has gotten worse as of the past few years.

I started searching for what could be casuing my problems and came upon Celiac. The reasons I think it's possible is because I did have a bout of anemia when I was a child,I had trouble gaining weight(although not anymore I have to say!) but I wasn't short for my age. Now I am having these stomach issues and the thyriod problem.

The reasons I don't thiink I have it is because I never had stomach problems. As a matter of fact when the rest of my family complained about stoamch issues I prided myself as to I could eat anything and be fine.

I don't seem to react right after gluten. For Thanksgiving I purposely ate a lot of starchy things to see and I never felt better. I not only felt fine and had no gas but my bowel movements have been fine the past few days. I was also trying to keep myself relaxed because since these stomach things have started I have been a bundle of nerves. So that might have had something to do with it. Today the trapped gas started again,not real bad though but it's bothering me. I had a normal bowel movement but went a couple of times.

Other than this I feel great!

So my questions are do you have a reaction right after the gluten intake of can it take a few days to hit you? Do you feel o.k. during the day and when you eat gluten it makes you sick or is it ongoing all day that you don't feel good? Is trapped gas in the upper abdomen a symptom? in otherwords do you feel gassy all the time because the gluten is in your system all the time or do you know you ate it because you get a direct reaction from it?

I am waiting for my upper GI results. Than I thought I would go to the GP and ask him to do the bloodwork for Celiac,plus a CBC for the anemia(which should be fine),my feritin,and a vitamin panel test(if there is such a thing). The only thing is I read a couple of posts that mentioned people have trouble getting health and life insurance if they were labeled Celiac. Why is that? Because the cancer risk is higher?(another thing that I'm very paranoid about).

That makes me a little nervous to have it checked. How many of you self dx'd because of that risk? I'm not sure what to do because of that. Any advice on that subject? Should I open a can of worms?

Also if I do go and the bloodwork comes out negative should I go back to the gastro Dr. and ask for an endoscope?

I'm not even sure my symptoms warrant me being concerend since I haven't noticed a direct reaction to gluten,ever,not even now. But I don't know how subtle the symptoms can be. And because of my thyriod. I would hate to go around with this if I have it and take a risk of cancer.

Sorry for the long rant but I'm very confused. Any help will be appreciated.

[daffadilly]

A lot of people do not have an obvious reaction to gluten. In my family when we are eating gluten it seems that it is the other foods that give us problems. I call wheat the great masquerader because for some people that is all they can eat and not get a tummy ache, but if they eat anything else it is a tummy ache and other symptoms. This is not true for everyone but I have seen it in a friend that went gluten-free & several of my family members, we have DQ1 genes.

My sister newly diagnosed thru Enterolab, (two DQ1 genes) and positive blood work, just said to me “I cannot eat fruit, it gives me a stomach ache” Well I expect that when she gets the gluten out of her system that she will be able to eat fruit.

The insidious part of gluten is that for some people they can eat it at a meal and it does not make them instantly sick. That is why it is so hard to piece it all together. Who can figure out that the reason your bones hurt this morning and the reason you got a migraine at 2:00p.m. was because you had garlic bread & pasta for dinner and then two pieces of toast for breakfast? The American Diet consists of gluten for every meal and snack. Our bodies are overloaded with it. You are never without gluten in your system.

I would encourage you to test thru Enterolab.com. Total cost for most of the tests is about $369.00 (including the gene test), and worth every penny, IMO. No doctors orders needed, you order the kit on line, they have it delivered to your house, you send it back & with two to three weeks they email you the results.

My family is also on the overweight side, with constipation and a lot of food allergies, asthma, skin rashes hives, depression, emotional issues, IBS, on and on… Your family sounds a lot like mine.

You are smart to have gotten this far and to be asking these questions. It is your health and you have more interest in that than any doctor so you have to find out what it right for you. (sounds to me like you would benefit for a gluten-free diet)

oh, I also have another sister that cannot eat beef, me either.

[annacsmom]

HI and wecome to this board. You understandably have a lot of questions so I'll try to help you out with a few. I'd like to give you my experience with my 18 yr. old daughter. Along with everyone else on this site, her journey has been long and difficult. But a few things ring true in your story. First of all, she has Hashimoto's hypothyroidism, and I wonder if you have had your thyroid antibody panel done. This would tell you if you have autoimmune hypothyroidism. If you do, I must tell you that celiac and this a lot of times go hand in hand. Also, my daughter's ferritin level has been 4-5 for years, and nobody even glanced twice at that. She has suffered so needlessly, but again, anemia and celiac can go hand in hand. She has had very serious hair loss as well, but after going on a good iron supplement, and sublingual b12, and a gluten free diet, she is finally on a slow road to recovery. Looking back, I believe she has had celiac her whole life, but was only diagnosed this past August. Also, one of the main reasons why celiac wasn't even a diagnostic possibility for her was because she had NO intestinal problems at all. Her main symptoms were incredible muscle weakness, fatique, and more recently, anxiety.

Like you, I can see different family members who have very celiac-like symptoms. I myself have had no health complaints, but now when I look back I wonder about the incredible gas pains and bad canker sores and failure to put on weight I experienced when I was younger. It could be latent celiac disease.

As far as experiencing gluten symptoms after ingesting gluten, it varies according to the person. The only way to truly test for gluten intolerance is to totally eliminate gluten, including food, personal care products, no cross contamination, and see how you feel. This would take several months, not just a couple of weeks. If you feel incredibly better, then you have your answer. If you are still unsure, you can try a gluten challenge.

I hope this helps somewhat, but feel free to continue asking questions. We'll try to help as much as possible.

[Bon359]

A lot of people do not have an obvious reaction to gluten. In my family when we are eating gluten it seems that it is the other foods that give us problems. I call wheat the great masquerader because for some people that is all they can eat and not get a tummy ache, but if they eat anything else it is a tummy ache and other symptoms. This is not true for everyone but I have seen it in a friend that went gluten-free & several of my family members, we have DQ1 genes.

My sister newly diagnosed thru Enterolab, (two DQ1 genes) and positive blood work, just said to me “I cannot eat fruit, it gives me a stomach ache” Well I expect that when she gets the gluten out of her system that she will be able to eat fruit.

The insidious part of gluten is that for some people they can eat it at a meal and it does not make them instantly sick. That is why it is so hard to piece it all together. Who can figure out that the reason your bones hurt this morning and the reason you got a migraine at 2:00p.m. was because you had garlic bread & pasta for dinner and then two pieces of toast for breakfast? The American Diet consists of gluten for every meal and snack. Our bodies are overloaded with it. You are never without gluten in your system.

I would encourage you to test thru Enterolab.com. Total cost for most of the tests is about $369.00 (including the gene test), and worth every penny, IMO. No doctors orders needed, you order the kit on line, they have it delivered to your house, you send it back & with two to three weeks they email you the results.

My family is also on the overweight side, with constipation and a lot of food allergies, asthma, skin rashes hives, depression, emotional issues, IBS, on and on… Your family sounds a lot like mine.

You are smart to have gotten this far and to be asking these questions. It is your health and you have more interest in that than any doctor so you have to find out what it right for you. (sounds to me like you would benefit for a gluten-free diet)

oh, I also have another sister that cannot eat beef, me either.

Thank you for your reply. So if you do it through Entrolab and it comes out positive should you let a Dr. know? Can you do this yourself? What happens if you do it with Entolab and it comes out negative? Should you assume you don't have it or go to a Dr. to make sure with a biopsy? Is Entrolab realiable?

My problem is my family is very skeptical about things. My husband is always in denial about health issues and my kids are junk food junkies(they have no symptoms of anything except the following below). I try to keep healthy food in the house.They think I'm a hypochondriac(which I am sometimes). So if I come to them telling them that we have to keep all junk food and gluten things out of the house they will go nuts. Although if I prove to them it can kill us than I guess they will have to go for it.

I just hope I don't have it and it's nothing.

I forgot to mention that I had canker sores when I was a kid and now get them sometimes on my tongue. Not often. My 10-year old had a bad bout of canker sores on her tongue that started last year. They were so bad that I had to keep her home from school. She has had a few minor bouts of them since. The Dr. just said people get them. The pharmiscist told me he carries around a bottle of Canker(medicine to put on them) because he gets them all the time.

Also my husband has hypothyriodism too but has no stomach issues.

I guess I'll have to make sure by either Entrolab or talking to my Dr.

[Nantzie]

I did the official medical tests for three reasons.

1) My husband thought celiac was just another of the dozen or so health kicks I had been on to try and fix my symptoms. He didn't realize that the symptoms that I was trying to fix were the same ones I had been suffering with for 18 years. He started thinking I was a hypochondriac and being worried that it might all be in my head. Long story, and not uncommon here for some reason. Worked out fine. Husband is gluten-free at home along with the kids and I now.

2) Both my parents died of cancer, most recently my dad died of stomach cancer in 2004, six months after his diagnosis. I wanted an endoscopy to make sure there wasn't something more serious than celiac going on.

3) I've got so many family members with symptoms that I wanted some official testing so that maybe they would take it seriously. So far nobody in my family wants anything to do with it.

Other than that, as soon as I tried the gluten-free diet, my symptoms went away like somebody flipped a switch. I tried the diet just to see if I was barking up the right tree. After I had such dramatic improvement, I had such a hard time making myself eat gluten for the tests and biopsy that I finally gave up on it about a month before the biopsy. So I'll never know if I would have had a positive biopsy if I had kept eating the equivalent of 3-4 slices of bread a day (blech) that I would have had to eat to even get to the point where I MIGHT have come up positive.

I'm glad that I didn't push for a diagnosis based on my dietary results. I'm officially "gluten intolerant", which I'm more than fine with. Things are so up in the air right now when it comes to insurance that I'd rather fly under the radar than have to deal with that. My kids are both "gluten intolerant" based on my own intolerance and their own dramatic improvements on the gluten-free diet. We only did blood tests, which were borderline, and passed on the biopsy. Their doctor treats them exactly the same way that she treats her biopsy-positive celiac patients.

If it wasn't for my family history and my husband's scepticism, I would have just gone with my dietary results.

It's not unusual for people to have no symptoms at all. Your family sounds like they have some of the classic symptoms though.

The testing aspect is an individual decision. I'm glad that my kids and I have it out in the open with all of our doctors (we're very lucky to have great doctors for all of us).

With your family having such strong symptoms, they should at least give the gluten-free diet a try. If they're not the type to do anything without a doctor's order, then you might want to consider doing the testing yourself so that maybe your family will take the possibility seriously.

My testing ended up not being a good argument with my family because my blood tests came back negative and my biopsy was negative. But going gluten-free changed my life. I was having the classic GI symptoms along with painful neurological symptoms to the point where I could barely walk most days. All of it went away within a couple of days being gluten-free. It still blows my mind.

I'm glad you found us here. Welcome to the board.

Nancy

[Bon359]

HI and wecome to this board. You understandably have a lot of questions so I'll try to help you out with a few. I'd like to give you my experience with my 18 yr. old daughter. Along with everyone else on this site, her journey has been long and difficult. But a few things ring true in your story. First of all, she has Hashimoto's hypothyroidism, and I wonder if you have had your thyroid antibody panel done. This would tell you if you have autoimmune hypothyroidism. If you do, I must tell you that celiac and this a lot of times go hand in hand. Also, my daughter's ferritin level has been 4-5 for years, and nobody even glanced twice at that. She has suffered so needlessly, but again, anemia and celiac can go hand in hand. She has had very serious hair loss as well, but after going on a good iron supplement, and sublingual b12, and a gluten free diet, she is finally on a slow road to recovery. Looking back, I believe she has had celiac her whole life, but was only diagnosed this past August. Also, one of the main reasons why celiac wasn't even a diagnostic possibility for her was because she had NO intestinal problems at all. Her main symptoms were incredible muscle weakness, fatique, and more recently, anxiety.

Like you, I can see different family members who have very celiac-like symptoms. I myself have had no health complaints, but now when I look back I wonder about the incredible gas pains and bad canker sores and failure to put on weight I experienced when I was younger. It could be latent celiac disease.

As far as experiencing gluten symptoms after ingesting gluten, it varies according to the person. The only way to truly test for gluten intolerance is to totally eliminate gluten, including food, personal care products, no cross contamination, and see how you feel. This would take several months, not just a couple of weeks. If you feel incredibly better, then you have your answer. If you are still unsure, you can try a gluten challenge.

I hope this helps somewhat, but feel free to continue asking questions. We'll try to help as much as possible.

Thank you. I think I did get tested for Hashimoto's one test was inclusive and I think another came back I did. I am going to check on that.

The thing with my feritan level was I had a reason for it. I was bleeding very heavy for a long time until I had my fibriods out. I never had true anemia for any length of time,escept borderline,right before they took the fibriods out. As soon as the bleeding was controlled and I went on the iron the levels went up very fast. My feritan level can be higher but I went off the iorn because my stomach. I thought the iron might be causing that.

If I decide to cut gluten out for a test. How do I handle that? My whole family won't do it so I have to cook for them. Plus I can't through out my pots and untensils just to try. What do you recommend? I thought I would get tested first so I don't have to go through all that if I don't have it. But then I'm afraid of the future insurance repercussions.

Also I am very paraniod of getting cancer. How prevalant is that? Have you heard of anyone getting cancer from it?

[annacsmom]

[quote

If I decide to cut gluten out for a test. How do I handle that? My whole family won't do it so I have to cook for them. Plus I can't through out my pots and untensils just to try. What do you recommend? I thought I would get tested first so I don't have to go through all that if I don't have it. But then I'm afraid of the future insurance repercussions.

Also I am very paraniod of getting cancer. How prevalant is that? Have you heard of anyone getting cancer from it?

[Bon359]

I did the official medical tests for three reasons.

1) My husband thought celiac was just another of the dozen or so health kicks I had been on to try and fix my symptoms. He didn't realize that the symptoms that I was trying to fix were the same ones I had been suffering with for 18 years. He started thinking I was a hypochondriac and being worried that it might all be in my head. Long story, and not uncommon here for some reason. Worked out fine. Husband is gluten-free at home along with the kids and I now.

2) Both my parents died of cancer, most recently my dad died of stomach cancer in 2004, six months after his diagnosis. I wanted an endoscopy to make sure there wasn't something more serious than celiac going on.

3) I've got so many family members with symptoms that I wanted some official testing so that maybe they would take it seriously. So far nobody in my family wants anything to do with it.

Other than that, as soon as I tried the gluten-free diet, my symptoms went away like somebody flipped a switch. I tried the diet just to see if I was barking up the right tree. After I had such dramatic improvement, I had such a hard time making myself eat gluten for the tests and biopsy that I finally gave up on it about a month before the biopsy. So I'll never know if I would have had a positive biopsy if I had kept eating the equivalent of 3-4 slices of bread a day (blech) that I would have had to eat to even get to the point where I MIGHT have come up positive.

I'm glad that I didn't push for a diagnosis based on my dietary results. I'm officially "gluten intolerant", which I'm more than fine with. Things are so up in the air right now when it comes to insurance that I'd rather fly under the radar than have to deal with that. My kids are both "gluten intolerant" based on my own intolerance and their own dramatic improvements on the gluten-free diet. We only did blood tests, which were borderline, and passed on the biopsy. Their doctor treats them exactly the same way that she treats her biopsy-positive celiac patients.

If it wasn't for my family history and my husband's scepticism, I would have just gone with my dietary results.

It's not unusual for people to have no symptoms at all. Your family sounds like they have some of the classic symptoms though.

The testing aspect is an individual decision. I'm glad that my kids and I have it out in the open with all of our doctors (we're very lucky to have great doctors for all of us).

With your family having such strong symptoms, they should at least give the gluten-free diet a try. If they're not the type to do anything without a doctor's order, then you might want to consider doing the testing yourself so that maybe your family will take the possibility seriously.

My testing ended up not being a good argument with my family because my blood tests came back negative and my biopsy was negative. But going gluten-free changed my life. I was having the classic GI symptoms along with painful neurological symptoms to the point where I could barely walk most days. All of it went away within a couple of days being gluten-free. It still blows my mind.

I'm glad you found us here. Welcome to the board.

Nancy

Nancy..I'm a little confused. did you do the tests after you went on the diet? You said you had the tests but they came out negative but you didn't want to eat the gluten to make a positive test. So I'm assuming they came out negative because you were already on the diet.

Does your Dr. know about you or just your kids Dr.? That's what I'm afraid of the insurance situation. Mine is fine now but for the future if I ever need insurance later when my husband retires. Do they refuse to insure? For what reason?

I don't understand why they would if you are on the diet and stable. Is it because they are afraid if you go off it's something that can't be controlled?

I asked a question about cancer above and you answered it sort of. I guess your parents or at least your dad might have it since it was stomach cancer. That's what scares me,although I have no cancer in family that I'm aware of. I wonder how long you can go without getting cancer. In otherwords while I'm waiting to figure this out am I risking getting cancer if it takes a few months?

I also have a family that thinks I'm a hypochondriac and don't want to have anything to do with anything. My mom tells me it'stress all the time.

[chrissy]

food feeling like it is getting stuck is a reflux symptom. i would have the scope done if it were me. i just recently had one done and was told i had severe reflux esophagitis----but my symptoms did not seem that bad. an upper gi series is probably not going to give you a whole lot of information.

your symptoms sound like they could be caused by any number of things. if you are concerned about celiac, ask your doctor to run a total IgA serum test and a TTG test. i fyou test through enterolab it is almost guaranteed that they will tell you that you are gluten intolerant. the HIGH rate of gluten intolerance that they seem to diagnose has alot of people wondering about the validity of their tests.

trying a gluten free diet is pretty easy and will tell you if going gluten free would help any of your symptoms.

[Bon359]

food feeling like it is getting stuck is a reflux symptom. i would have the scope done if it were me. i just recently had one done and was told i had severe reflux esophagitis----but my symptoms did not seem that bad. an upper gi series is probably not going to give you a whole lot of information.

your symptoms sound like they could be caused by any number of things. if you are concerned about celiac, ask your doctor to run a total IgA serum test and a TTG test. i fyou test through enterolab it is almost guaranteed that they will tell you that you are gluten intolerant. the HIGH rate of gluten intolerance that they seem to diagnose has alot of people wondering about the validity of their tests.

trying a gluten free diet is pretty easy and will tell you if going gluten free would help any of your symptoms.

Chrissy the food getting stuck has stopped totally. I just feel this achyness,indigestion,sometimes it feels like someone beat me up inside feeling. And I get a trapped gas feeling,like I need too pass it but it won't move down. It doesn't seem to happen with any type of food. In otherwords it doesn't seem like anything triggers it. But I do have the loose stoamch problem.

I guess there are people that can have IBS and not have anything else. But my concern is that I do have thyriod. So I have no choice but get it checked.

The reason I had the upper GI was because the Dr. thought it could be an ulcer. An upper GI will tell that along with other things. It can even tell if there is a growth and other things. My mother was dx'd with a hiatal hernia that way. I just thought if they do that first than I can see if there is a reason to do the scope. But I would imagine in the long run I'll need the scope.

I'm glad you mentioned to me about Entrolab. I like the idea of doing the test on my own but I don't feel comfortable self-diagnosing. And if you say that they have a very high positive rate and is making people wonder than you are back to trying the diet again anyway. I thought about it and I think if you don't tell a Dr. and you have other furture health problems than things like that should be in your record.

What happens if you have to admitted to the hospital and they don't know about it and they give you someting you shouldn't have that can kill you. I guess you take a risk of having problems with the insurance companies but that goes for any diease you get. Everyone might get something sometime so they can turn you down for anything. Hopefully if you are on the diet and can prove you have been and are healthy maybe that will help.

I just made an appt. with my GP for next week. I am going to talk to him about this. I'm going to have all the blood tests. Recheck my thyriod,recheck my thyriod antibodies,CBC,anemia test,feritan test,vitamin and mineral panel(if there is one),and the Celiac panel. That should give me a pretty good picture of what is going on.

Than if he thinks I need the biopsy I guess I'll have to do it.

Here is my questions- let's say the test comes back negative should I go for the biopsy or just try the diet? If it comes back positive should I go for the biopsy or just go on the diet and assume if I feel better I'm healing and getting better?

Is the diet really the tell all? I assume if the test is positive than the diet will help. But if it's negative and I go on the diet(for a few months) and still have gassiness,and loose stools,should I figure it's not that and just IBS(ruling out other things of course).

In otherwords if you never get a positive and the diet doesn't work and you start eating gluten how do you know for sure it's not that? I guess negative test(s) and a negative to the diet means it's not that but can you be sure with the risk of cancer wanning?

I guess also if I go on the diet and it helps and than try gluten again and I get back the gassiness and loose stools than it's that.

Thanks for the hlep

food feeling like it is getting stuck is a reflux symptom. i would have the scope done if it were me. i just recently had one done and was told i had severe reflux esophagitis----but my symptoms did not seem that bad. an upper gi series is probably not going to give you a whole lot of information.

your symptoms sound like they could be caused by any number of things. if you are concerned about celiac, ask your doctor to run a total IgA serum test and a TTG test. i fyou test through enterolab it is almost guaranteed that they will tell you that you are gluten intolerant. the HIGH rate of gluten intolerance that they seem to diagnose has alot of people wondering about the validity of their tests.

trying a gluten free diet is pretty easy and will tell you if going gluten free would help any of your symptoms.

Chrissy I forgot to ask...do you have Celiac or just your kids? If so is the reflux from the Celiac? My sister has Gerd but she has a hiatal hernia.

And how is the gentic testing down? Is that a blood test?

[daffadilly]

One of the reasons that a lot of people test positive thru Enterolab is that most of us that test with them already know we have a problem. My sister just tested positive via blood test & then we sent her testing into Enterolab to confirm that we already knew she had a problem with dairy also & to see which genes she has.

Another reason is that celiac and gluten sensitivity affect 30% (THIRTY) of the population. & those of us that have families and friends suffering from this can see that is true. (as an aside a lot of it is from the Irish that mostly populated this country, & the English).

There are those of us that see the health issues caused by gluten that wonder if anyone really needs to be eating the stuff. & for one Dr. Oz, a surgeon, from the Oprah show, says that no one should be eating enriched white flour. He also says no saturated fat, no corn syrup, etc.

If you think Enterolab is slanted to a positive diagnosis, you will soon find that the regular blood tests and biopsy are slanted to get negatives. You might not get a positive biopsy until you have almost total villi atropy and then it is almost too late, and even then if you do not directly ask the doctor to look for celiac you will not get a dx.

The doctors have taught you that you need them for every little thing. So anyone that thinks they need their doctors permission to go gluten free, is going to wait a looooooooooong time.

But in the mean time one can keep going back to them for all the little unexplained health problems. We all know from the docs telling us that it is mostly in our head, we are just getting older, some people just have that, and my favorite - idiopathic

[Audiori J]

I am somewhat new to this, and others can probably answer better. But the way I understand this whole thing; If you are gluten intollerant or celiac and you eat things with gluten/wheat/flour it basically keeps your small intestines irritated. This can manifest itself in different ways in different people. But technically, an irritated digestive tract can manifest itself in poor digestive problems (lactose, etc), mouth sores, gas, diarrhea, constipation, cramps, bloating, etc. The malabsorbtion of nutrients can cause fatigue, insomnia/tough time waking, irritability, aching joints, mood swings, stunted growth, loss of weight, etc. Then on top of it all you can end up with headaches, migraines, sinus issues, skin irritation, etc.

Its a poisoning of your digestive tract, since your digestive system is how your body refuels itself and replentishes itself. An irritated poorly functioning digestive system can and will affect pretty much everything

over time. If we don't listen to all the warning signs our body is giving us that something is not right, eventually it moves on to more serious problems.

The symptoms can seem misleading, its possible to be lactose intollerant merely because your system cannot function properly to break down fatty foods because its all filled with toxins from all the gluten we put in our bodies. The liver and gall bladder are over worked. I would also imagine if gluten works like other chemical addictions, your body can crave it and you might get a relief from the withdrawl symptoms by ingesting it, even though technically thats bad. Start feeling bad and getting a headache, grab a piece of bread. Eat some crackers.

Its only after you've changed your diet and actually really gone through the withdrawl that you start feeling good. Then if you accidentally ingest gluten, you feel the real effects. I would imagine it gets more complicated too if maybe you are allergic to other foods, but they would probably affect your system in a similar way.

[Bon359]

I am somewhat new to this, and others can probably answer better. But the way I understand this whole thing; If you are gluten intollerant or celiac and you eat things with gluten/wheat/flour it basically keeps your small intestines irritated. This can manifest itself in different ways in different people. But technically, an irritated digestive tract can manifest itself in poor digestive problems (lactose, etc), mouth sores, gas, diarrhea, constipation, cramps, bloating, etc. The malabsorbtion of nutrients can cause fatigue, insomnia/tough time waking, irritability, aching joints, mood swings, stunted growth, loss of weight, etc. Then on top of it all you can end up with headaches, migraines, sinus issues, skin irritation, etc.

Its a poisoning of your digestive tract, since your digestive system is how your body refuels itself and replentishes itself. An irritated poorly functioning digestive system can and will affect pretty much everything

over time. If we don't listen to all the warning signs our body is giving us that something is not right, eventually it moves on to more serious problems.

The symptoms can seem misleading, its possible to be lactose intollerant merely because your system cannot function properly to break down fatty foods because its all filled with toxins from all the gluten we put in our bodies. The liver and gall bladder are over worked. I would also imagine if gluten works like other chemical addictions, your body can crave it and you might get a relief from the withdrawl symptoms by ingesting it, even though technically thats bad. Start feeling bad and getting a headache, grab a piece of bread. Eat some crackers.

Its only after you've changed your diet and actually really gone through the withdrawl that you start feeling good. Then if you accidentally ingest gluten, you feel the real effects. I would imagine it gets more complicated too if maybe you are allergic to other foods, but they would probably affect your system in a similar way.

That's the dilema I'm going through. What happens if you stop eating it just to see and you aren't really intolerant. I mean if you aren't it won't do any harm to keep eating it. So you go off to see,it helps because it just does, so you stay off for a few months and than you try it again to see if that really was it. Than you get the symptoms back,logically you can assume that you have an intolerance but happens if you have been off it for so long and your body just can't handle it anymore because you were off of it but it's not really intolerance,how do you know?

Like vegetarians. If they don't eat meat for awhile and than decide to eat it probably would mess up their stomach at first, but they aren't really intolerant to meat.

One of the reasons that a lot of people test positive thru Enterolab is that most of us that test with them already know we have a problem. My sister just tested positive via blood test & then we sent her testing into Enterolab to confirm that we already knew she had a problem with dairy also & to see which genes she has.

Another reason is that celiac and gluten sensitivity affect 30% (THIRTY) of the population. & those of us that have families and friends suffering from this can see that is true. (as an aside a lot of it is from the Irish that mostly populated this country, & the English).

There are those of us that see the health issues caused by gluten that wonder if anyone really needs to be eating the stuff. & for one Dr. Oz, a surgeon, from the Oprah show, says that no one should be eating enriched white flour. He also says no saturated fat, no corn syrup, etc.

If you think Enterolab is slanted to a positive diagnosis, you will soon find that the regular blood tests and biopsy are slanted to get negatives. You might not get a positive biopsy until you have almost total villi atropy and then it is almost too late, and even then if you do not directly ask the doctor to look for celiac you will not get a dx.

The doctors have taught you that you need them for every little thing. So anyone that thinks they need their doctors permission to go gluten free, is going to wait a looooooooooong time.

But in the mean time one can keep going back to them for all the little unexplained health problems. We all know from the docs telling us that it is mostly in our head, we are just getting older, some people just have that, and my favorite - idiopathic

If you can only get a positive on a biopsy when most of the damage is done how long would you have to have had it without being on the diet for that to happen? There's people on here that said they got positive biopsies and are on the diet and are feeling better? Would you be more susectable to cancer if there is more damage done?

[chrissy]

i don't have celiac----just 3 of my girls do. two of them also have reflux problems that do not seem to be related to their celiac disease. i was hoping that their reflux would clear up when they went gluten free, but it didn't. my youngest daughter (no celiac) also had really bad reflux and had to have surgery for it right before she turned 10 months old--she had a hiatal hernia.

only one of my kids has had genetic testing done, because he is IgA deficient. he does not have active celiac disease, but he does carry one of the celiac genes. we are in the process of having genetic testing done on the whole family. we are part of a celiac study being done through the university of california, irvine. the testing is done through blood work.

i think it sound like you are making a good start by going to your GP and getting blood work done. it will probably be easier to decide what course of action to take once you see some blood work results.

[Bon359]

i don't have celiac----just 3 of my girls do. two of them also have reflux problems that do not seem to be related to their celiac disease. i was hoping that their reflux would clear up when they went gluten free, but it didn't. my youngest daughter (no celiac) also had really bad reflux and had to have surgery for it right before she turned 10 months old--she had a hiatal hernia.

only one of my kids has had genetic testing done, because he is IgA deficient. he does not have active celiac disease, but he does carry one of the celiac genes. we are in the process of having genetic testing done on the whole family. we are part of a celiac study being done through the university of california, irvine. the testing is done through blood work.

i think it sound like you are making a good start by going to your GP and getting blood work done. it will probably be easier to decide what course of action to take once you see some blood work results.

I want to thank everyone for being so helpful. I have never been on a message board that everyone was so responsive and helpful.

My sister and mother have hiatal hernias, my sister has GERD with it that comes and goes. She had an endoscope to confirm the GERD and my mother had an upper GI series to confirm the hiatal hernia.

So I guess GERD and hiatal hernia don't mean Celiac in all cases.

My sister is on what she calls a food plan to loose weight. She doesn't eat any sugar or breads. So because of her food plan she has pretty much taken gluten out of her diet. She does go to restaurants but eats what she can for her food plan. She has had no change in her stomach because she never had a problem before except GERD. That has calmed down some but she still gets bouts of it.

I am a very anxious,nervous person. In the past few months(or should I say since I started peri-menopause a few years ago) it's gotten worse,I have been on edge all the time all day long. My body is so stressed all the time,which isn't good. But I notice when I calm my body down my stomach is fine or nearly fine. When I get anxious that's when I feel it the most. I feel the acids starting and build up and they stay most of the day. It's almost like I can control it.

So my other thought is that it's anxiety and my stomach acids have just built up too much. It could be that I just need an acid reducer. I have also read that perimenopase can cause gastric upset and gas,but I can't imagine that should happen almost everyday.

But I am going to get tested because of the thyriod situation and because of my loose stoamch.