I Have Questions

[little d]

Hello to all

Ya'll know that I am fairly new here, been tested and just like many of ya'll and everything is negative. And ya'll also know that I am recovering from a broken foot the third time is not always a charm lol. My question is I have been ask what are my levels, I don't know because when I got tested last year for celiac disease I had already started the gluten-free diet almost 6 months at that time. GI said at that time would not make a differance well I guess it did, I think he thought i said 6 weeks but anyway I have no idea what my Celiac panel results were, or anything else, but I do have my scope pics and have no idea what im looking at but the GI says everything looks normal. I must have repaired everything if any damage was done, well ok. So then was told that the biopsy when normal he took 18 of them, I was mad. So would anybody do with an Irish temper do eat regular food again. I did and then GI wanted to do the PILLCAM I figured after eating regular food again for 6-7 months just may show something. Plus all my symptoms were in full force by them D, C, nausea, heartburn, stomach burn, very tired after eating, and others. Ok so my question now would be If I start which it has only been 3 days taking vits, to take my Multi for women, Calcium with vit D, and Omega 3 fish oil, will the levels be acurit if I keep taking them for a while. If I go get a regular physical from my family doc which i need one any way all I get is a female exam once a year anyway, she does not get any blood work. Will blood work show accurte levels and should ask for additional blood test. I know he will order CBC, Liver panel, colesterol levels. When i went last year I think that i messed up my levels because I forgot and drank coffee. I barely started gluten-free at this point I had to go there first to follow the protocol for getting referred to my GI.

Thank you to all for all you answers and comments , I know that I will get some

Donna

[Susanna]

Hey, little d--sorry you've had a tough time. My understanding about the celiac blood tests is that you have to currently be ingesting gluten (for 2 solid weeks before the blood draw) in order to get your best shot at "accurate" results. Any practitioner (doctor, nurse practitioner) examining you can order a "celiac panel" with whatever blood tests are being ordered--just ask for a celiac panel to be added. Don't bother if you're not eating gluten--the results will be worthless if you're not eating gluten. That said, also know that the tests are not completely foolproof--my brother tested negative on blood and intestinal biopsy, and I'm SURE he has celiac (my blood and biopsy were positive, and the gluten-free diet cured me, so I'm a confirmed diagnosis).

But here's another thought: your repeat foot fractures are suspicious for celiac. See, when your gut doesn't work right because you have celiac and you've been assaulting your gut with gluten your whole life, you don't absorb nutrients right, nutrients like calcium and this leads to osteopenia (weak bones) and more frequent bony fractures.

And here's something else: Many people here NEVER get a firm diagnosis, and you might be one of these. If so, here's the question for you to consider: if the gluten free diet was working for you, why ever would you go off of it???? A lot of people on these boards have given up the insisting on a definite clinical diagnosis, have diagnosed themselves from their symptoms, and treated themselves very successfully with the gluten-free diet. Something to think about....

Here are my gluten-free newbie tips:

Now you can eat to treat, and soon feel better. Here are some key coping strategies to get you started.

1. Know that you will grieve your old favorite gluten-filled foods. I actually tear up when I see a brioche sometimes. Grieving is normal, BUT IT IS NOT EASY OR COMFORTABLE. People around you will eat treats you can't have and you will feel sad and isolated. Strategy: stock your car, office, purse, backpack, secret drawer at home with gluten-free treats you can reach for any time you are feeling deprived. This really helped me. I recommend Baby Ruth Bars, Snicker Bars, Lara Bars, Dove Dark Chocolate, meringue cookies, macaroon cookies (read labels), Butterfinger, Reeses Peanut Butter Cups. You get the idea.

2. Know that it will take time (months, probably) to figure out what to eat (it took me 6 mos.) and during this time, it'll be kind of a daily challenge to plan meals. Every time you go to the store it'll be a challenge to choose groceries. Strategy: plan on an hour--don't bring kids or friends. Go the bathroom before you start grocery shopping. Bring your reading glasses--read every label. The good news is, THIS GETS MUCH BETTER OVER THE NEXT SEVERAL MONTHS AS YOU GET USED TO THE DIET.

3. It may take a while for your gut to heal, depending on how damaged it was at the time you went gluten free. So, you are going to have to be patient with your body--some people feel better immediately after going gluten-free, but most of us take longer than that. Don't give up if you don't see instant results. Strategy: Maximize your general health by getting enough rest, water, exercise, and limiting stress. Maximize your digestive health by limiting foods that are hard on the gastrointestinal tract until you're feeling better: limit irritants like dairy, caffeine, alcohol, and fried foods--these are all hard to digest--go back to them when you feel your gut is recovering.

4. Accept right now that it will be YOUR job to teach those around you about your diet

[Kellygirl]

Hey, little d--sorry you've had a tough time. My understanding about the celiac blood tests is that you have to currently be ingesting gluten (for 2 solid weeks before the blood draw) in order to get your best shot at "accurate" results. Any practitioner (doctor, nurse practitioner) examining you can order a "celiac panel" with whatever blood tests are being ordered--just ask for a celiac panel to be added. Don't bother if you're not eating gluten--the results will be worthless if you're not eating gluten. That said, also know that the tests are not completely foolproof--my brother tested negative on blood and intestinal biopsy, and I'm SURE he has celiac (my blood and biopsy were positive, and the gluten-free diet cured me, so I'm a confirmed diagnosis).

But here's another thought: your repeat foot fractures are suspicious for celiac. See, when your gut doesn't work right because you have celiac and you've been assaulting your gut with gluten your whole life, you don't absorb nutrients right, nutrients like calcium and this leads to osteopenia (weak bones) and more frequent bony fractures.

And here's something else: Many people here NEVER get a firm diagnosis, and you might be one of these. If so, here's the question for you to consider: if the gluten free diet was working for you, why ever would you go off of it???? A lot of people on these boards have given up the insisting on a definite clinical diagnosis, have diagnosed themselves from their symptoms, and treated themselves very successfully with the gluten-free diet. Something to think about....

Here are my gluten-free newbie tips:

Now you can eat to treat, and soon feel better. Here are some key coping strategies to get you started.

1. Know that you will grieve your old favorite gluten-filled foods. I actually tear up when I see a brioche sometimes. Grieving is normal, BUT IT IS NOT EASY OR COMFORTABLE. People around you will eat treats you can't have and you will feel sad and isolated. Strategy: stock your car, office, purse, backpack, secret drawer at home with gluten-free treats you can reach for any time you are feeling deprived. This really helped me. I recommend Baby Ruth Bars, Snicker Bars, Lara Bars, Dove Dark Chocolate, meringue cookies, macaroon cookies (read labels), Butterfinger, Reeses Peanut Butter Cups. You get the idea.

2. Know that it will take time (months, probably) to figure out what to eat (it took me 6 mos.) and during this time, it'll be kind of a daily challenge to plan meals. Every time you go to the store it'll be a challenge to choose groceries. Strategy: plan on an hour--don't bring kids or friends. Go the bathroom before you start grocery shopping. Bring your reading glasses--read every label. The good news is, THIS GETS MUCH BETTER OVER THE NEXT SEVERAL MONTHS AS YOU GET USED TO THE DIET.

3. It may take a while for your gut to heal, depending on how damaged it was at the time you went gluten free. So, you are going to have to be patient with your body--some people feel better immediately after going gluten-free, but most of us take longer than that. Don't give up if you don't see instant results. Strategy: Maximize your general health by getting enough rest, water, exercise, and limiting stress. Maximize your digestive health by limiting foods that are hard on the gastrointestinal tract until you're feeling better: limit irritants like dairy, caffeine, alcohol, and fried foods--these are all hard to digest--go back to them when you feel your gut is recovering.

4. Accept right now that it will be YOUR job to teach those around you about your diet

[little d]

Suzanna

Ok so you are telling me that in order for a celiac panel to come back positive I need to have gluten in my system, well I am not completely off Gluten I still get some one way or another. It has only been 2 to 4 weeks since I started gluten-free again and when I had my pillcam I was glutened for at least 6 to 7 months but did not get a blood test done. The GI should have seen somthing because I had all my symptoms again when pillcam was done, I guess that I still don't understand that well yet, but I'm trying, The vitiamins that I'm taking should I stop them to get an accurate reading on my levels, or keep them on board for now. To see if i am low on iron, calcium and others.

Donna

[Nantzie]

What I've always heard here from the members who keep up on current research is that you need to be eating the equivalent to 3-4 slices of bread a day for three to four months in order to destroy your intestines to the point where there is so much damage that a biopsy would even have a chance of hitting some damage.

This is going to come across as stern, but I'm really concerned about you.

What I'm wondering is are you planning on waiting until you have a positive test before you make a commitment to the diet? You may end up banging your head against a wall for years. Is it really worth all the suffering you're putting yourself through. All your fighting for is a word on a chart.

I think it's important to go through testing because you want to make sure it's nothing else either more scary or needing surgery (like diverticulitis or cancer) or that might need a different diet (like Crohn's). If you've already been tested up down and sideways and they're not finding anything, than all you can do is take things into your own hands.

The gluten-free diet is a healthy diet in general. You can't eat fast food or junk food for the most part, and you eat a lot of fresh foods.

If the gluten-free diet doesn't help, you're not any worse off than you were before. There are a lot of people here who find out that they have other food intolerances, so it may not even be gluten, but soy or dairy or eggs, etc.

The bottom line is that they may never EVER find any damage. You may have a gene type that doesn't involve intestinal damage. Are you going to suffer for the next 10 years because they haven't been able to prove that gluten makes you miserable?

Just think of it this way, 20 years ago, ALL of us - almost 15 thousand people and over 100 unregistered guests just on this message board at any given time - would have been told that there was nothing wrong with us. 20 years ago, they didn't even know that celiac affected adults.

So what about those few people who 20 years ago somehow figured out that wheat didn't agree with them, but thought they needed a test result in order to make that kind of diet change? Are you going to wait 20 years, 10 years or even 5 years for the researchers to wade through all this stuff, the 3-5 years it takes for this info to get into the regular doctors and specialists brains, and into commonly known information until you decide to try it?

I was one of the one's who had negative tests and negative biopsy. I had to make the decision on whether I was going to just give it a shot or continue the way I was living.

I decided to just try it and my life has never been the same. I'm concerned that you're waiting for something that may never happen and I don't want to see you keep suffering.

Please just make a commitment to go on the diet as if you've got a diagnosis, and see how you feel in a few months. If you don't respond to the diet, then YOU will know for sure it's not gluten and you can go forward to figure out what else it might be.

According to a poll that I did here a few months ago 60% of us here don't have an official diagnosis. We just tried it, not knowing if we were going to find an answer or not.

Just jump in and join the party.

Nancy

[little d]

Nancy

THank you for that kick in the pants pep talk, Yes I do feel tons better being on the diet, I know that it is much more healthier for me and probably for my husband and daughter as well since there are a lot of stomach issues in is family. Right now they are testing all members over the age of 55, siblings, on his moms side, I only herd the name one time of what his grandma had surgery, had something to do with the superpior vein running along to the stomach, going to the heart vein. any way, Yes I would like to have a diagnoses and all so I can attach a name to what is wrong with me. Thank you Nancy for your advise.

Donna

[Piccolo]

Little d

I broke my toe in November and I know it is still healing. So join the club of broken bones. Good luck with the broken foot. I hope it is not too painful.

Susan

[ravenwoodglass]

Suzanna

Ok so you are telling me that in order for a celiac panel to come back positive I need to have gluten in my system, well I am not completely off Gluten I still get some one way or another. It has only been 2 to 4 weeks since I started gluten-free again and when I had my pillcam I was glutened for at least 6 to 7 months but did not get a blood test done. The GI should have seen somthing because I had all my symptoms again when pillcam was done, I guess that I still don't understand that well yet, but I'm trying, The vitiamins that I'm taking should I stop them to get an accurate reading on my levels, or keep them on board for now. To see if i am low on iron, calcium and others.

Donna

You have gotten some great advice already. I was someone who failed to show up on blood work, this delayed my diagnosis by over 10 years. This resulted in some pretty nasty permenent problems that even after 5 years have not resolved and because they are brain related perhaps never will. If I had the excellent advice you have been given my world might not still be tipping sideways and I might have more than 30 seconds warning that I have to go to the bathroom.

I could be wrong about this but since many times the small intestine of a celiac will look fine visually and multiple biopsies in just the right spot need to be taken to confirm the diagnosis I highly doubt the 'pill cam' would be of any value in diagnosing any of us but the ones who are the most far advanced. As the doctor told my DD after her scope and biopsies, "We did find changes, you don't at this point have celiac. You have a choice you can stop eating gluten now and prevent the problems your Mom had or you can continue with eating it until you are sick enough to show clearly as a celiac. But by then some of your other organs could be too damaged to repair."

[Nantzie]

Nancy

THank you for that kick in the pants pep talk, Yes I do feel tons better being on the diet, I know that it is much more healthier for me and probably for my husband and daughter as well since there are a lot of stomach issues in is family. Right now they are testing all members over the age of 55, siblings, on his moms side, I only herd the name one time of what his grandma had surgery, had something to do with the superpior vein running along to the stomach, going to the heart vein. any way, Yes I would like to have a diagnoses and all so I can attach a name to what is wrong with me. Thank you Nancy for your advise.

Donna

I'm glad I was helpful. I know what you mean about wanting an official name. Usually when someone doesn't fit the strict diagnostic profile the diagnosis is stated as "gluten intolerance". There are also a couple other phrases - "non-celiac gluten intolerance" and "atypical celiac". Then there are the ones that we have made up here, trying to find another phrase - gluteniac (short for gluten maniac), gluten toxicity syndrome, glutensucksitis.

Ultimately, if you respond well to the gluten-free diet, not having a diagnosis is merely an occasional irritation. To be honest, nobody here cares if you have a diagnosis or not. It's just as common to not have one as it is to have one. So don't worry about that part at all.

If you have the financial resources, you might want to think about Enterolab testing. It could give you some of the answers you're looking for. The full panel is $370, which will give you the gene test which looks for all the gluten intolerance genes as well as the celiac ones, and a stool test which looks for gluten and dairy intolerance and malabsorption. You can also order individual tests - I ordered the gene tests ($150) for me and my kids as I could afford it, and the gluten stool test ($99) for my kids as I could afford it. I think it's totally worth it. Open Original Shared Link

And ravenwood is right. You don't want to end up with irreversible damage, which is a very real possibility. My gene type (DQ1) has more neuro problems than the classic celiac gene types. I had a complete reversal of my neuro symptoms, but have noticed that most people with that gene type don't. I only had the neuro symptoms for about 2-3 years, so maybe I was just lucky enough to catch it in time.

Nancy

[little d]

Nancy

Hi, I have seen info on celiac disease that there are neuro problems but it never went into detail of what the symptoms are. Thanky you everybody for all of your advise, it does make me fell better.

[Guest lorlyn]

Donna

One advantage of not having a official diagnosis is your medical records does not list you having a disease. So your life and health insurance now and in the future should still be obtainable. I feel bad for my 10 year old daughter because it is in her medical records and she could have problems with her insurance policies now and the rest of her life

[NoGluGirl]

Dear Donna,

I know how you feel. I had a negative biopsy and endo, as well as blood tests. However, my holistic physician diagnosed me with Celiac. I have a typical history, too. I am of Irish descent, I have been anemic, had eczema, Thyroid disease, lost my gallbladder at 20 years old, as well as I have had digestive troubles that were so severe, they debilitated me. All of the symptoms you described in your first post were the same ones I had. Doctors just told me I was crazy and doped me up on pills when they could not figure it out.

My doctor says she has had a handful of Celiac patients test negative like I did in blood work. Also, something else is that I used to spit up every formula my parents put me on as an infant. At three weeks old, they had to put me on 2 percent milk. I have a very violent reaction to gluten. Even a microscopic amount makes me terribly ill. I will break out in a sweat, get very nauseated, start shaking, sometimes my hands go numb, have the sudden urge to have a bowel movement (immediately!), and if I do not get a promethazine down quick enough, dry heaves that make me feel like my insides are emploding. Honestly, I do not think those idiots up at IU Med knew what they were looking for. They missed the gallbladder, why couldn't they miss Celiac?

Dear Kelly,

I have been told I should be a doctor with all the reseach I have done! I hate those morons. I do not want to become one. What I want to do is become a lawyer who sues them for hurting people and ruining their lives! I would like to be the Nancy Grace of Malpractice lawsuits!

Sincerely,

NoGluGirl