Hey New To The Forums

[Glutenfreenoobie]

Hey, first post on these boards. I'm not sure if I'm Celiac, or if I have a gluten allergy, or gluten intolerance, or something else. About a year ago I got sick and I was taken to my doctor and my doctor said I had to go to the hospital. A lot of tests were run on me but the doctors couldn't figure out what was wrong with me.

I'm a young male and the results all said I was healthy. The sickness went away but I had indigestion problems for about 2-3 months. About 1.5 months ago I started have the indigestion problems again and I decided to go gluten free. I went gluten free for a month and slowly started reintroducing gluten into my diet. I started to feel sick again, lots of gas so now I'm going off gluten and the symptoms are dulled.

Honestly, I do not trust doctors anymore. After what happened a year ago, I felt my doctors did a bunch of tests on me, took my money, and caused stress when I did not need stress. Any opinions of whether I might have a gluten allergy? I'd rather not go to a doctor and receive invasive tests and/or drugs.

[Wolicki]

I would say based on positive dietary response, you are one of us. The thing to do is to look at everything: prescriptions, OTC meds, shampoo, toothpaste, etc. If you live in a gluteny household, get your own toaster, condiments, etc. because YES someone douple dipping a knife into the peanut butter or margarine can make you sick!

It also helps most to give up dairy for a while anyway, because the lactose is processed in the villi that are damaged from the gluten.

Doctors dont get it because celiac and GI are not "black and white," but more shades of gray. Make sure you are definitely 100% gluten free, and your symptoms should disappear after a period of time. For some it's immediate, for others it can take longer. Ask your questions here, everyone is willing to help!

Janie

[mommida]

Welcome to the board.

Glad to hear a gluten free diet is making you feel better.

[Glutenfreenoobie]

Welcome to the board.

Glad to hear a gluten free diet is making you feel better.

Hmmm, I still have some symptoms, mostly upset digestive system as of right now. Is there any food I can eat that will help purge my system of gluten? I just have a little bit of gas and erratic elimination of waste. For example I'll drink 10oz of water over 2 hours and I'll have to pee 6 times in the same 2 hours.

Wolicki "If you live in a gluteny household, get your own toaster, condiments, etc. because YES someone douple dipping a knife into the peanut butter or margarine can make you sick!"

Peanut butter and Margaine don't have gluten do they?

[mushroom]

Wolicki "If you live in a gluteny household, get your own toaster, condiments, etc. because YES someone douple dipping a knife into the peanut butter or margarine can make you sick!"

Peanut butter and Margaine don't have gluten do they?

Not in and of themselves they don't, but if someone dips in a knife that has breadcrumbs on it, now they do

For some, gluten causes them to retain fluid, which could account for what seems like excessive urination.

And for the remaining digestive symptoms, perhaps some digestive enzymes would help your pancreas out a little, because sometimes its ability to produce enzymes is impaired by gluten. Stick with it, and keep asking questions.

[Wolicki]

No PB and margarine (for the most part) do not contain gluten. But if someone else sticks a knife in the PB, then smears it on their bread, then sticks it back in the PB, then you can get glutened from the crumbs.

a month and a half is not that long. You could still have lingering symptoms or have another intolerance that popped up after you went gluten free.

[Glutenfreenoobie]

No PB and margarine (for the most part) do not contain gluten. But if someone else sticks a knife in the PB, then smears it on their bread, then sticks it back in the PB, then you can get glutened from the crumbs.

a month and a half is not that long. You could still have lingering symptoms or have another intolerance that popped up after you went gluten free.

A month and a half is not that long? Oh man I've been having lots of trouble with my social life trying to go gluten free. My friends tend to love baked goods. I can't believe how many of my favorite fast food restaurants serve gluten. Oddly I've never liked steak before and now I like steak a lot. Seems by eliminating gluten, other foods I suddenly like. I'm also eating a lot of seafood. I've been crazed about eating seafood lately.

Mushroom "And for the remaining digestive symptoms, perhaps some digestive enzymes would help your pancreas out a little, because sometimes its ability to produce enzymes is impaired by gluten. Stick with it, and keep asking questions."

Hmm, by digestive enzymes you mean yogurt right? I've been drinking the last of the soy milk in my house until the digestive problems diminish.

[mushroom]

Mushroom "And for the remaining digestive symptoms, perhaps some digestive enzymes would help your pancreas out a little, because sometimes its ability to produce enzymes is impaired by gluten. Stick with it, and keep asking questions."

Hmm, by digestive enzymes you mean yogurt right? I've been drinking the last of the soy milk in my house until the digestive problems diminish.

No, yogurt is not enzymes. Yogurt contains good probiotics which promote a healthy gut (balancing out the good/bad bacteria in there), provided you are not also intolerant to lactose and/or casein. Many are at first intolerant of lactose because the enzyme to digest it is produced at the tips of the villi in the gut which are damaged by gluten, so you have to wait for healing for them to grow back and start producing lactase again. Others are intolerant to the casein (milk protein) in dairy also. Some are also intolerant of soy - it is a common co-intolerance with gluten. You might want to try almond milk or hemp milk or any gluten free rice milk (not Rice Dream, it has barley) as a substitute for now until you find out what your tolerances are.

Enzymes are a tablet/capsule supplement which contain lipase (for fats) lactase (milk) protease (protein) amylase, often bromelain and papain. A normal healthy pancreas will produce enzymes in abundance but a damaged one may struggle at first and need some help, depending on the amount of damage you have. They won't hurt you, and they can help. Just make sure they are gluten free, as with all medications and supplements.

Yeah, you do have to readjust your social life a little when you leave out the gluten. Don't forget that gluten lurks in sauces and salad dressings and marinades, which are the common pitfalls when eating out. Also, gluten lurks in french fries if they are fried in a fryer that has been used for frying breaded foods. Just a heads up there

[Glutenfreenoobie]

A month and a half is not that long? Oh man I've been having lots of trouble with my social life trying to go gluten free. My friends tend to love baked goods. I can't believe how many of my favorite fast food restaurants serve gluten. Oddly I've never liked steak before and now I like steak a lot. Seems by eliminating gluten, other foods I suddenly like. I'm also eating a lot of seafood. I've been crazed about eating seafood lately.

Mushroom "And for the remaining digestive symptoms, perhaps some digestive enzymes would help your pancreas out a little, because sometimes its ability to produce enzymes is impaired by gluten. Stick with it, and keep asking questions."

Hmm, by digestive enzymes you mean yogurt right? I've been drinking the last of the soy milk in my house until the digestive problems diminish.

I was wondering if gluten can really damage the brain? I was looking up gluten and I heard the term "neurotoxin" I googled "neurotoxin gluten" and found the following article:

https://www.celiac.com/articles/1085/1/Gluten-Causes-Brain-Disease-By-Prof-Rodney-Ford-MB-BS-MD-FRACP/Page1.html

Most of the doctors when I went to the hospital thought I was on drugs and when the tests were done and no drugs, I was sent to a psychiatrist. Is it possible someone could be having a gluten allergy and be locked up inside a mental institution, and being fed gluten? None of the doctors, and I saw several even mentioned the possibility of a food allergy. Instead, I was given a spinal tap and my fluids checked.

[Stylo]

Welcome! I'm in the same boat as you. I just got negative blood test results yesterday but I've already started noticing a reduction in my symptoms since going gluten free. It's only been two weeks for me and each day I feel a little bit better.

Watch out with the steak, if they put soy sauce on it make sure it's gluten free. That was the hardest for me, finding gluten free soy sauce. Brags amino acids was recommended to me by a couple people and tastes just the same for half the price.

I've seen others on here just live off of rice and chicken and adding basic veggies to their diet slowly while their stomach heals, but that's up to you and it depends I guess on your discomfort.

If I'm wrong about anything here, please correct me, I'm new at this too and I'm just going by what I've read.

[Glutenfreenoobie]

Welcome! I'm in the same boat as you. I just got negative blood test results yesterday but I've already started noticing a reduction in my symptoms since going gluten free. It's only been two weeks for me and each day I feel a little bit better.

Watch out with the steak, if they put soy sauce on it make sure it's gluten free. That was the hardest for me, finding gluten free soy sauce. Brags amino acids was recommended to me by a couple people and tastes just the same for half the price.

I've seen others on here just live off of rice and chicken and adding basic veggies to their diet slowly while their stomach heals, but that's up to you and it depends I guess on your discomfort.

If I'm wrong about anything here, please correct me, I'm new at this too and I'm just going by what I've read.

I find it almost funny that people believe a test given by a doctor over the patient. I mean who is going to know you better than yourself? I do not need to know the exact number of antibodies in my system, to know whether I am adversely affected by gluten. The steak I cooked myself, so I know no soy sauce. I'll look into the Brags amino acids.

[newgfcali]

I was wondering if gluten can really damage the brain?

Oh, yeah. Lots and lots of connections between gluten and brain/central nervous system/peripheral nervous system problems.

Here's a link to another forum about neuro topics that talks about the link between gluten and neuro issues:

Open Original Shared Link

Look under the heading "Neurologic Manifestations".

[Black Sheep]

I have a friend who says that MSG is also a neurotoxin. Does anyone know anything about this? Or any good sites I could go to, to read up on it?

G.F.noobie, re. your stomach upset, I was wondering: are you talking about something that feels like indigestion, and/or acid reflux? Because if you are, I have some experience with that, unfortunately. What happened with me, years before going g.f. (I'm a newbie, too--g.f. for all of 5 weeks now!), was not an indigestion-type "burning" after I'd eat, but more of a feeling like my food was just sitting there like a huge lump, going nowhere. It didn't hurt, was just uncomfortable. And sometimes at night, I'd get a tiny bit of acid reflux. I was also having many other health problems and of course, the "mainstream" docs were no help at all. I had OAB. I had fibro. I had chronic fatigue. I this, I had that, but no one was willing to even look at any of the root causes. So I finally went to a Naturopath, and one of the first tests they wanted to do was to see how much stomach acid my stomach was producing. So I swallowed a tiny radio transmitter encased in what looked like a multi-vitamin, got hooked up to the monitor, and away we went. My stomach acid was measured in 20-min. increments, and the results were both there to see on the monitor (like a heart monitor), and printed out on a page. I was told that every 20 min., when they gave me the tiny doses of soda, that my stomach acid should suddenly spike on the graph, and that in between there should be smaller waves.

Mine was practically flat-lined the whole time. It was worse than the Hypochloridia that they suspected--it was called something like a-hypochloridia. They said that almost every single person who comes to their clinic and thinks they have indigestion, or even doesn't, but has other health problems, has low stomach acid, which causes a whole host of other problems....like for me, it caused pernicious anemia. So I had to start taking HCL pills with every meal. After taking fish oil, B-12 sublinguals, and many other things for a year or so, I had it re-tested, and it had improved so much that my stomach was producing normal acid, except for the first 20 minutes, it was still low--but nowhere near flat-lined. So I'm hoping that going g.f. will repair it the rest of the way.

Now there is a reason, which actually makes sense, why people with very low stomach acid would still have reflux, but darned if I can remember what it is! But I could look it up if you like. However, I don't know if this is even one of your problems, so I'm not saying anyone should run out and buy HCL, as taken wrong (like with any type of NSAIDS), taking too strong a dose, etc., can be really bad. I'm just saying that if your stomach problems seem to be "indigestion" or reflux, low acid could be the culprit there. But please don't think I'm saying gluten has nothing to do with it, either--even if low acid is a culprit, gluten is probably the culprit of culprits!

Glad you found this board, people here are so helpful. And it's nice to have a place where people understand what you're going through!

[Glutenfreenoobie]

I have a friend who says that MSG is also a neurotoxin. Does anyone know anything about this? Or any good sites I could go to, to read up on it?

G.F.noobie, re. your stomach upset, I was wondering: are you talking about something that feels like indigestion, and/or acid reflux? Because if you are, I have some experience with that, unfortunately. What happened with me, years before going g.f. (I'm a newbie, too--g.f. for all of 5 weeks now!), was not an indigestion-type "burning" after I'd eat, but more of a feeling like my food was just sitting there like a huge lump, going nowhere. It didn't hurt, was just uncomfortable. And sometimes at night, I'd get a tiny bit of acid reflux. I was also having many other health problems and of course, the "mainstream" docs were no help at all. I had OAB. I had fibro. I had chronic fatigue. I this, I had that, but no one was willing to even look at any of the root causes. So I finally went to a Naturopath, and one of the first tests they wanted to do was to see how much stomach acid my stomach was producing. So I swallowed a tiny radio transmitter encased in what looked like a multi-vitamin, got hooked up to the monitor, and away we went. My stomach acid was measured in 20-min. increments, and the results were both there to see on the monitor (like a heart monitor), and printed out on a page. I was told that every 20 min., when they gave me the tiny doses of soda, that my stomach acid should suddenly spike on the graph, and that in between there should be smaller waves.

Mine was practically flat-lined the whole time. It was worse than the Hypochloridia that they suspected--it was called something like a-hypochloridia. They said that almost every single person who comes to their clinic and thinks they have indigestion, or even doesn't, but has other health problems, has low stomach acid, which causes a whole host of other problems....like for me, it caused pernicious anemia. So I had to start taking HCL pills with every meal. After taking fish oil, B-12 sublinguals, and many other things for a year or so, I had it re-tested, and it had improved so much that my stomach was producing normal acid, except for the first 20 minutes, it was still low--but nowhere near flat-lined. So I'm hoping that going g.f. will repair it the rest of the way.

Now there is a reason, which actually makes sense, why people with very low stomach acid would still have reflux, but darned if I can remember what it is! But I could look it up if you like. However, I don't know if this is even one of your problems, so I'm not saying anyone should run out and buy HCL, as taken wrong (like with any type of NSAIDS), taking too strong a dose, etc., can be really bad. I'm just saying that if your stomach problems seem to be "indigestion" or reflux, low acid could be the culprit there. But please don't think I'm saying gluten has nothing to do with it, either--even if low acid is a culprit, gluten is probably the culprit of culprits!

Glad you found this board, people here are so helpful. And it's nice to have a place where people understand what you're going through!

Hey Black Sheep, I'm not sure what acid reflux is, I just assumed I was too young to get acid reflux. Anyways I read part of your post and then I was at the ice cream parlor and before I ate anything I belched, but not a full belch and I felt like vomit came up to my throat, yet I didn't get any gagging or urge to to vomit. Is the above acid reflux?

I'm going to try to finish reading the rest of your post now. I sometimes have trouble reading large blocks of text w/o white space in-between. I learned in art we need contrast to see.

[Glutenfreenoobie]

Oh, yeah. Lots and lots of connections between gluten and brain/central nervous system/peripheral nervous system problems.

Here's a link to another forum about neuro topics that talks about the link between gluten and neuro issues:

Open Original Shared Link

Look under the heading "Neurologic Manifestations".

I've been reading the thread about the neuro/gluten connection and its scary. I'm feeling sad just thinking about the content. No wonder I didn't look into a gluten intolerance prior. Same with the GERD or acid reflux. I've had a vomit feeling when I belch from time to time for so many years I just thought it was normal.

I guess the problem is assuming normalcy with these chronic illnesses. I just assumed I was normal and my body was acting normal, and that I just got sick more often than most people. I mean once you've been sick for so long with an illness, how do you remember what normal is?

[bittykitty]

I've been reading the thread about the neuro/gluten connection and its scary. I'm feeling sad just thinking about the content. No wonder I didn't look into a gluten intolerance prior. Same with the GERD or acid reflux. I've had a vomit feeling when I belch from time to time for so many years I just thought it was normal.

I guess the problem is assuming normalcy with these chronic illnesses. I just assumed I was normal and my body was acting normal, and that I just got sick more often than most people. I mean once you've been sick for so long with an illness, how do you remember what normal is?

People looking at me like I'm faking being sick for some bizarre reason pisses me off.I have to deal with not being able to participate in normal situations,such as eating muffins in the break room,or going out for pizza and beer,with a smile.Seriously,who the HELL would give up pizza/beer unless they had to??Won't even go into the medical community..they are a whole special rant on their own.On my 5th doctor in 8 months.I'd cut my leg off if it made me"normal"again.

Welcome to the board..these people are wonderful, and very knowledgeable.Hope you start feeling better soon!

[Glutenfreenoobie]

People looking at me like I'm faking being sick for some bizarre reason pisses me off.I have to deal with not being able to participate in normal situations,such as eating muffins in the break room,or going out for pizza and beer,with a smile.Seriously,who the HELL would give up pizza/beer unless they had to??Won't even go into the medical community..they are a whole special rant on their own.On my 5th doctor in 8 months.I'd cut my leg off if it made me"normal"again.

Welcome to the board..these people are wonderful, and very knowledgeable.Hope you start feeling better soon!

Anyone know if gluten intolerance or Celiac are hereditary? My dad has been complaining of allergies, particularly headaches when he stands up. Think my dad has some sort of adverse reaction to gluten like me?

[ravenwoodglass]

Anyone know if gluten intolerance or Celiac are hereditary? My dad has been complaining of allergies, particularly headaches when he stands up. Think my dad has some sort of adverse reaction to gluten like me?

Yes it is very strongly hereditary. In my family it was 100% both in my immediate family, brothers and mother and likely my father and in my children. The chance of other family members also being celiac when one has been diagnosed is high. Family members should all be tested, even if they don't seem to have symptoms, and if they do have symptoms a trial of the diet is advised after testing is finished even if the results are negative.

[Glutenfreenoobie]

Yes it is very strongly hereditary. In my family it was 100% both in my immediate family, brothers and mother and likely my father and in my children. The chance of other family members also being celiac when one has been diagnosed is high. Family members should all be tested, even if they don't seem to have symptoms, and if they do have symptoms a trial of the diet is advised after testing is finished even if the results are negative.

Hmmm, well I'm not going to the doctor to get a bunch of blood tests. First I'm not insured, second off I feel lightheaded when I see blood, third I'm not sure if I like getting pricked with needles and the other inconveniences. Right now I'm having trouble eating at fast food restaurants with my friend and family. Not only am I forced to eat at home more but the cooking is more restrictive.

Part of me wants to say, "I'll take my chances and eat gluten anyways" or "this is just a bad dream." Yet, a couple days ago when I ate a sticky bun from the Qmart I felt a lot worse and got really irritable and angry in addition to indigestion. Anyone else get angry the day after eating gluten? The anger is what makes me think I am not sick in the traditional virus/bacteria sense. Instead, I think the anger is caused by some sort of allergic reaction or intolerance.

Is it possible to develop an intolerance later in life? Edit: One more question does a gluten allergy really double death rate as according to the following BBC new article?

Open Original Shared Link

Edit2: I keep reading more and more about gluten intolerance on the internet, I gotta stop. I'm still baffled that none of my doctors has ever mentioned a food allergy of any kind. According to many websites many doctors do not believe in food allergies. Then, I find another article that says patients with less severe symptoms of celiac disease are at an increased risk of death as opposed to patients with more severe symptoms. My guess is the more severe symptoms are noticed faster.

[mushroom]

I'll bet that the medical journal did not call it an "allergy". This is a misnomer as an allergy is a totally different response by the body, causing an IGe reaction. Celiac disease is an autoimmune *disease* caused by an intolerance to gluten which causes the body to attack itself. I won't go in to the whole mechanism of how it works, but it is often mistakenly called an allergy, as the BBC headline writer did.

The article is correct in that many cancers are caused by a gluten intolerance, not just lymphoma, but colon and stomach cancer among others, and not to mention diseases like multiple sclerosis, rheumatoid arthritis, diabetes, autoimmune thyroid conditions including cancer, and the list could keep going on and on. If you know you are intolerant to gluten, you are playing with fire if you continue to eat it in any amounts. And if you are trying to avoid gluten, the last place you should be thinking of eating is a fast food joint

Do not look to your doctors to come up with the diagnosis. Tell your doctor you want to be tested (and don't look when they draw the blood ) Yes it is possible for the intolerance to manifest late in life; some of us are in our sixties when we finally self-diagnose or get a doctor to listen. And yes, many people experience mood changes with ingestion of gluten. For some it is irritability, for some it is depression; others experience neurological symptoms. There are more than 200 different ways in which a gluten intolerance can express itself. Some have no digestive issues at all.

You should listen to what your body is trying to tell you and do something about it. Either get tested (if that's what it will take to get you to treat this seriously), or be diligent about eliminating gluten from your diet. If the total elimination of gluten doesn't help at all, then that's probably not what the problem is.

[Black Sheep]

I hate getting blood tests, too! They always hurt so much due to my low pain threshold (which may be due to gluten causing neurotransmitter problems, according to my doc); also because my veins are hard to find, and collapse. Ugh.

If I were going to get tested, which I'm not, I think I'd do the Enterolab stool test. I don't have insurance, for one, and this is affordable; also, I'm 5 weeks g.f. and am not about to go back to gluten just for a blood test that so often shows a false negative anyway. Now if I had insurance, I might be more willing to do the testing, and get the biopsy done.....so I can see both sides of it.

[Glutenfreenoobie]

I hate getting blood tests, too! They always hurt so much due to my low pain threshold (which may be due to gluten causing neurotransmitter problems, according to my doc); also because my veins are hard to find, and collapse. Ugh.

If I were going to get tested, which I'm not, I think I'd do the Enterolab stool test. I don't have insurance, for one, and this is affordable; also, I'm 5 weeks g.f. and am not about to go back to gluten just for a blood test that so often shows a false negative anyway. Now if I had insurance, I might be more willing to do the testing, and get the biopsy done.....so I can see both sides of it.

Good point Black Sheep, I would have to go back on gluten to get a test that has a good chance of a bad result. As of now I plan to try to eliminate all gluten for 3 months and then assess how I am doing. Love your avatar btw Black Sheep.

Mushroom, I didn't know that suffers of gluten intolerance are more suspect-able to diabetes. Diabetes runs in my family. Again, I'm not insured so I'm not going to get tested for diabetes, not that I think I have diabetes anyways.

One more question is it possible to have a gluten allergy or is all gluten in tolerances a variant of celiac? I know some people have stronger reactions than others to gluten, for example alligator skin.

[mushroom]

Good point Black Sheep, I would have to go back on gluten to get a test that has a good chance of a bad result. As of now I plan to try to eliminate all gluten for 3 months and then assess how I am doing. Love your avatar btw Black Sheep.

Mushroom, I didn't know that suffers of gluten intolerance are more suspect-able to diabetes. Diabetes runs in my family. Again, I'm not insured so I'm not going to get tested for diabetes, not that I think I have diabetes anyways.

One more question is it possible to have a gluten allergy or is all gluten in tolerances a variant of celiac? I know some people have stronger reactions than others to gluten, for example alligator skin.

Well, I know it is possible to have an allergy to wheat; I don't know about gluten allergy. Maybe someone else can help on this. My neighbor swears she has a wheat allergy, although she has never had standard testing for it--only the psychic kind of swinging pendulum which you can believe or not according to your inclination. At any rate, it is enough for her to avoid wheat. She also has other food intolerances. I don't know about wheat allergy causing alligator skin I have some alligator skin, but I just think of it as very dry scales, along with all my other skin conditions

I am glad you are going to give gluten free a good trial. Read up on the forum here about what you have to do to get rid of all the gluten, from your kitchen, personal care products, label reading, etc., to be sure you get it all. I hope it works for you

[Glutenfreenoobie]

Well, I know it is possible to have an allergy to wheat; I don't know about gluten allergy. Maybe someone else can help on this. My neighbor swears she has a wheat allergy, although she has never had standard testing for it--only the psychic kind of swinging pendulum which you can believe or not according to your inclination. At any rate, it is enough for her to avoid wheat. She also has other food intolerances. I don't know about wheat allergy causing alligator skin I have some alligator skin, but I just think of it as very dry scales, along with all my other skin conditions

I am glad you are going to give gluten free a good trial. Read up on the forum here about what you have to do to get rid of all the gluten, from your kitchen, personal care products, label reading, etc., to be sure you get it all. I hope it works for you

I felt fatigued all of yesterday and today looks the same. From what I understand I haven't eaten gluten in 4 days or so. If the fatigue is caused by a gluten intolerance I wonder how long I can have symptoms after cutting out gluten.

[mushroom]

I felt fatigued all of yesterday and today looks the same. From what I understand I haven't eaten gluten in 4 days or so. If the fatigue is caused by a gluten intolerance I wonder how long I can have symptoms after cutting out gluten.

Many folks go through a gluten withdrawal phase, which can last for a couple of weeks at least. Gluten makes you feel good and when you take it away your body wants a fix