gluten-free 9 Mo. But Still Not Improvement - Should I Go To Mayo?

[Blitz]

Hi Everyone,

Just a quick backgrounder... experiencing slowly worsening chronic fatigue since 1996; diagnosed positive for celiac by both bloodwork and biopsy in Feb/08. Went on gluten-free diet almost immediately after that and only had one gluten incident in March/08 (which I spat out).

I do still go to restaurants, but only ones that publish their allergen ingrediants, or which are totally gluten-free specialists. However, because I don't get any acute reactions to gluten (i.e. big-D, etc.), it's really hard to know if I've been accidentally glutened.

I recently bought a home celiac bloodtest kit ($50 vs. lab test @ $125), on the theory that if I still test positive for celiac, then it means I've probably ingested gluten at some point in the past few months (I understand it can take some time for the levels to drop).

However, my chronic fatigue, which was always my primary symptom (I don't get the acute ones really) has not improved, and in fact it's still slowly getting worse. I'm getting to the point where I'm not just unable to do the things I want to, but it's now impacting my ability to work. And being self-employed I don't have any LTD or STD program to lean on.

I have been to see various specialists (endocrinologist, rheumatologist and allergist), all with zero success. They all do their little tests and pronounce that I should be fine, but I'm quite obviously not. At one point a doc suggested (indirectly) that it could be psychological, however I dismiss that theory outright because I like to think I'm a pretty well grounded person, and I'm still very ambitious and motivated, despite my health problems.

Some helpful people on these forums have previously suggested it may be something indirectly related, like hypothyroid or adrenal fatigue. However, the doctors I've seen disagree based on bloodwork, and my family doctor won't even let me try taking thyroid hormones (despite some begging).

So, I'm at a crossroads now... do I continue to deal with the ineffective medical system here, or go to a U.S. clinic like Mayo? It would cost me a lot of money (they want $2500-4500 deposit to see you), but it may be worth it if they can figure out what's wrong with me.

Any input would be very helpful.... I'm going to take a nap now..

Thanks in advance...

Geoff.

[gfpaperdoll]

Geoff, what is a typical days meals like for you?

Are you taking B12 & vitamin D? Did you get all your vitamin & mineral levels checked?

Are you taking any medications that are not gluten-free?

Did you replace all your gluten foods with the same versions of gluten-free foods?

Do you live in a gluten-free household?

Do you work in an industry that you are exposed to gluten? That is if you work...

Did you also give up dairy, soy & oats?

[Green Eyes]

Hey Geoff,

You have just wrote out my life!!! I do not have GI symptoms like most celiacs and I do not react to small amounts of gluten. Found that out by accident but the results are the same. I have been to numerous doctors trying to find out why I was having pain down my left leg and groin area. I was told it was all in my head, I was crazy, I was making it up and the list continues. As I would get those responses I would continue to find another doctor for help.

I had the fatigue that never seemed to go away. I blamed it on my celiac and was convinced the issues I was having were all connected. That is my celiac, my pain and my hysterectomy. All of the issues started at once.

After going thru many doctors - "firing" them and looking for others. I tried a chiropractor and he found my problems. My spine had 9 vertebre out of alignment and my pelvis was twisted. My only question then was why didn't I hurt more.

Having said that I believe there are good chirproactors and bad ones. But the idea is that if there is anything pressing on your nerves you brain is unable to send message to that area (or organ) for it to function properly. There is an area that is also effects "chronic tiredness." But now I understand that all these areas were related, but it was my back out of alignment. It didn't cause my celiac but did effect the healing process.

I'm only on week 3 of adjustments and therapy, but the pain is completely gone. I'm sore but feeling better everyday. I did not have an injury that caused the misalignment, it was just years of little things.

Don't give up, keep up the fight.

Jennifer

[mftnchn]

Hi Geoff,

I think there are a few things I would try before going to Mayo (which also could be a "zero" as far as help goes.)

Since you are diagnosed celiac, there are a number of problems pretty common to us. First of all I would try going off dairy, then if that doesn't help, go off soy as well. If no change, then I would try the specific carbohydrate diet. The villi damage from celiac can cause lack of carbohydrate digestive enzymes, and the sugars and starches can't be completely broken down. They get into the lower intestine where they shouldn't be and not only prevent healing but can lead to a lot of imbalance in the microorganisms there.

After 15 months of gluten-free, plus CF and SF, it was the SCD that made a huge difference in my energy levels. Once you heal for a year or two you should be able to reintroduce the carbs carefully.

Also, read up on chronic fatigue syndrome. There are some who are making progress on antibiotics.

I second the suggestions here about checking vitamin and nutrient levels.

[raisin]

This may be a stupid question but.. Have you ruled out cross-contamination, called every company of every food you eat to be sure they don't also process wheat/barley/rye?

Most packaged "gluten-free" foods aren't. This includes brands like Nature's Path, Rice Dream, and generally anything not produced on a dedicated line. I have personally found there is virtually no such thing as a "safe product" from a "generally unsafe brand." Sometimes it is less obvious, like hand or dish soap, toothpaste, chap stick. Sometimes it comes from living in a non-gluten-free home, or crumbs from someone eating near you.

Eating out is especially dangerous. Even with a well-trained or instructed staff, or in seemingly safe places. That is very likely your problem.

[Blitz]

Wow, lots of questions... but that's good.

Geoff, what is a typical days meals like for you?

Breakfast: gluten-free cereal like Nature's Path Corn Flakes w/ milk. Lunch: rice cakes w/ peanut butter, or soup (no wheat on label) and rice bread, etc. Dinner: varies, but I read the labels on everything.

Are you taking B12 & vitamin D? Did you get all your vitamin & mineral levels checked?

No, but I take multivitamins every day. I did try taking sublingual B12 tablets for a few months, with no positive change.

Are you taking any medications that are not gluten-free?

I only take one medication, which I had the pharmacist check and it only contains corn starch.

Did you replace all your gluten foods with the same versions of gluten-free foods?

Pretty much, although I eat a fair bit of salad, which is obviously gluten-free.

Do you live in a gluten-free household?

No, but there's only one other person, and I keep all my gluten-free foods separate and labeled to avoid cross contamination.

Do you work in an industry that you are exposed to gluten? That is if you work...

No, luckily I am self-employed doing IT consulting.

Did you also give up dairy, soy & oats?

Yes for oats, no for dairy (although I have considered it), and no for soy.

Cheers,

Geoff.

[Blitz]

Hey Geoff,

You have just wrote out my life!!! I do not have GI symptoms like most celiacs and I do not react to small amounts of gluten. Found that out by accident but the results are the same. I have been to numerous doctors trying to find out why I was having pain down my left leg and groin area. I was told it was all in my head, I was crazy, I was making it up and the list continues. As I would get those responses I would continue to find another doctor for help.

I had the fatigue that never seemed to go away. I blamed it on my celiac and was convinced the issues I was having were all connected. That is my celiac, my pain and my hysterectomy. All of the issues started at once.

After going thru many doctors - "firing" them and looking for others. I tried a chiropractor and he found my problems. My spine had 9 vertebre out of alignment and my pelvis was twisted. My only question then was why didn't I hurt more.

Having said that I believe there are good chirproactors and bad ones. But the idea is that if there is anything pressing on your nerves you brain is unable to send message to that area (or organ) for it to function properly. There is an area that is also effects "chronic tiredness." But now I understand that all these areas were related, but it was my back out of alignment. It didn't cause my celiac but did effect the healing process.

I'm only on week 3 of adjustments and therapy, but the pain is completely gone. I'm sore but feeling better everyday. I did not have an injury that caused the misalignment, it was just years of little things.

Don't give up, keep up the fight.

Jennifer

Glad to know I'm not the only one out there w/o the acute GI symptoms. It's kind of a blessing and a curse, in that it's impossible to know when you've ingested something containing gluten. At least the other way if you make a mistake, you'll suffer a bit, but you won't do it again! Some may beg to differ though...

Interesting about the back being the cause for your leg pain. I have had lower back problems over the years, but they started up quite a few years after the initial chronic fatigue (which followed a mono infection)... and the chiro said it was mostly because of weak muscles supporting the spine and whatnot... which makes sense. But I generally don't like chiros, and we don't have osteopaths up here anymore (all went to U.S. apparently).

Thanks for the support.

Geoff.

[Blitz]

Hi Geoff,

I think there are a few things I would try before going to Mayo (which also could be a "zero" as far as help goes.)

Since you are diagnosed celiac, there are a number of problems pretty common to us. First of all I would try going off dairy, then if that doesn't help, go off soy as well. If no change, then I would try the specific carbohydrate diet. The villi damage from celiac can cause lack of carbohydrate digestive enzymes, and the sugars and starches can't be completely broken down. They get into the lower intestine where they shouldn't be and not only prevent healing but can lead to a lot of imbalance in the microorganisms there.

After 15 months of gluten-free, plus CF and SF, it was the SCD that made a huge difference in my energy levels. Once you heal for a year or two you should be able to reintroduce the carbs carefully.

Also, read up on chronic fatigue syndrome. There are some who are making progress on antibiotics.

I second the suggestions here about checking vitamin and nutrient levels.

Thanks for the reply...

I have read that going off dairy and soy can help, but my main reason for not wanting to is that going gluten-free was difficult enough since I don't really like to cook.

As for the vitamins and minerals, I have had most of them tested and they all came back fine according to my doctor. Looking over my lab results (I always get a copy) I can see that my Ferritin levels are a bit on the low side (37, normal is 41-300), however my Doc has never flagged them or done anything about them... ?!

I may be living alone in the next few months, which should make it easier to control what I'm exposed to, if that's been the problem all along.

Thanks for the suggestions, very much appreciated.

[Blitz]

This may be a stupid question but.. Have you ruled out cross-contamination, called every company of every food you eat to be sure they don't also process wheat/barley/rye?

Most packaged "gluten-free" foods aren't. This includes brands like Nature's Path, Rice Dream, and generally anything not produced on a dedicated line. I have personally found there is virtually no such thing as a "safe product" from a "generally unsafe brand." Sometimes it is less obvious, like hand or dish soap, toothpaste, chap stick. Sometimes it comes from living in a non-gluten-free home, or crumbs from someone eating near you.

Eating out is especially dangerous. Even with a well-trained or instructed staff, or in seemingly safe places. That is very likely your problem.

Sounds like purgatory to me... calling every company that is... lol.

I doubt it's cross-contamination at home, as I have my own foods which are labeled and separate, as well as my own utensils, dishes, cutting boards, pots and pans, etc. Although I must confess I don't do a lot of cooking at home... probably owing to the fact that I'm a 30 y/o guy.. heh

Thanks for the advice!

Geoff.

[Fiddle-Faddle]

Cutting out dairy, I think, is a must for the first few months of going gluten-free, as if you have damaged villi, those villi are not going to be able to produce lactase--and I remember reading that dairy can prevent gluten-damaged villi from healing!

Luckily, there are quite a few really, really good dairy-free milks out there, including rice milk (but NOT Rice Dream--it claims to be gluten-free but it's not), almond milk (my favorite!) and hemp milk (never heard of it before this year, but it's yummy--and I CAN drink regular milk!).

Your diet sounds awfully heavy on gluten-free breads and cereals. Most of us had to avoid those until our intestines healed, as they are even more difficult to digest than the gluteny originals (for different reasons, obviously). Can you sub plain rice and potatoes for the rice breads and cereals for now?

As for Mayo, isn't it full of doctors who are likely to treat you the same as your current ones?

[pele]

Hi Geoff,

I think there are a few things I would try before going to Mayo (which also could be a "zero" as far as help goes.)

Since you are diagnosed celiac, there are a number of problems pretty common to us. First of all I would try going off dairy, then if that doesn't help, go off soy as well. If no change, then I would try the specific carbohydrate diet. The villi damage from celiac can cause lack of carbohydrate digestive enzymes, and the sugars and starches can't be completely broken down. They get into the lower intestine where they shouldn't be and not only prevent healing but can lead to a lot of imbalance in the microorganisms there.

After 15 months of gluten-free, plus CF and SF, it was the SCD that made a huge difference in my energy levels. Once you heal for a year or two you should be able to reintroduce the carbs carefully.

Also, read up on chronic fatigue syndrome. There are some who are making progress on antibiotics.

I second the suggestions here about checking vitamin and nutrient levels.

Hi Geoff

I think Sherry is right on target. If you area diagnosed celiac, you have gut damage. It can take more to heal that than a gluten-free diet. I wouldn't waste my time and money at Mayo either, but that is just my opinion.

Try taking probiotics and digestive enzymes. Stop eating processed foods. Try the Specific Carbohydrate Diet. There is a big thread here on it or read up at breakingtheviciouscycle.info

The other thing I suggest is finding a doc or NP who specializes in anti-aging medicine. He or she will really check you out for thyroid and adrenal issues, not just give the standard tests for THS, T4 and Addisons.

Good luck!

[TrillumHunter]

"my Ferritin levels are a bit on the low side (37, normal is 41-300)"

I feel like a zombie and sleep 11 hours a day at this level. In my personal experience anything that has values spread this wide can be misleading. I start to have symptoms as I drift toward the low end. If I stay towards the middle of the level I am fine. I would question this additionally because you are male. If you look at a more detailed lab value source it breaks this down by gender. I'm not at home so I don't have my book at hand to tell you where you would fall on that. Males need to be very cautious with iron and I wouldn't supplement without some input from your dr. Have they ever done an occult blood test? Low ferritin in a young male would raise a red flag for me. I would continue to get some more diagnostic work done.

Good luck and keep pushing!

[sbj]

Hi Geoff:

I do not think that your chronic fatigue is associated with gluten. When you mentioned mono it seemed quite likely that your chronic fatigue syndrome is associated with that infection. It is quite common and, as you know, very difficult to overcome. Perhaps it is not possible and it is something that you are going to have to learn to manage rather than 'cure'. Sorry to say that.

There is no cure for CFS; however, like mono treatment, there are a variety of ways in which to manage the effects of CFS on an individual, including:

• healthy diet
  
  
• stress management and reduction
  
  
• regular, carefully monitored exercise
  
  
• yoga, tai chi and/or meditation
  
  

In addition, cognitive behavioral therapy and anti-depressant medication may also be prescribed

These guidelines aren't suggesting that chronic fatigue is in your head - they are suggesting that you use your head to manage your expectations and learn to live with what might be a lifelong condition. I hope that you can find some relief and I, also, don't think that such a large investment would be warranted for Mayo. I'd suggest more extensive research into chronic fatigue and really throwing yourself into some of the management therapies suggested. (You should be able to verify that your gluten-free diet is working by doing comparative bloodwork and checking a new biopsy versus the original you must have had for your initial celiac diagnosis.) Best of luck.

[zeta-lilly]

Do you know your thyroid levels? There have been some major changes in thinking over the last few years as far as what qualifies as hypothyroid. Although if you've been to endocrinologists, they would probably know about the new research even if most family docs do not. They used to say that TSH levels should be below 5, and they've recently revised that to below 3.

I would suggest requesting all your medical records and going through them. It sounds like they've done quite a bit of labwork (well, hopefully they did before telling you that you were "fine"). I know it sounds daunting, but sometimes there will be levels that are off and doctors will just ignore it for whatever reason.

Have you tried seeing another doctor? I mean, even if they can't find anything wrong with you, you clearly have chronic fatigue, which is a health problem on its own. It is possible that you also have another autoimmune disease like fibromyalgia or lupus. Apparently celiac patients are more prone to those as well :-(.

Lastly I would suggest stopping eating at restaurants. I know you said that you read ingredient lists, but I'm one that reacts very violently to gluten and most restaurants are not safe. I used to try, but I just kept getting glutened. I was assured that one restaurant had dedicated fryers for their fries and I reacted to it. Then I noticed that when they pulled up the baskets from the un-dedicated fryers, they dripped all kinds of oil into the dedicated fryers. Mystery solved. Anyway, I would suggest going on a super-clean diet for a couple weeks without eating anything that could have even remotely come close to gluten. Look closely at your over the counter drugs, pots and pans, toaster, shampoo, even your wife's lipstick. Before you shell out that much money, you need to triple check everything or you'll just be wasting money!

If you've done all that and still nothing then I would go to mayo. Life's too short to feel bad. I hope everything turns out okay for you!

[Fiddle-Faddle]

There have been a few people on this board who were diagnosed with CFS and/or fibro; their symptoms disappeared with the gluten-free diet.

This doesn't mean the CFS and fibro can't exist separately from celiac (though I wouldn't rule that out, either); but it does indicate that at least some of the time, celiac/gluten intolerance can cause the exact same symptoms that result in those diagnoses.

CFS and fibro are SYNDROMES. That means they are collections of symptoms where the doctor can't figure out the cause--but there IS always a cause, even the doctors don't know what it is.

The way I see it, that means that management of symptoms is a very last resort. The first order of business (as you are doing now) is to find the cause or causes.

Mold exposure is another cause of otherwise unexplained symptoms, and so is exposure to chemicals (like, if you've recently had your home sprayed for insects, which can certainly have a toxic effect on humans).

[Blitz]

"my Ferritin levels are a bit on the low side (37, normal is 41-300)"

I feel like a zombie and sleep 11 hours a day at this level. In my personal experience anything that has values spread this wide can be misleading. I start to have symptoms as I drift toward the low end. If I stay towards the middle of the level I am fine. I would question this additionally because you are male. If you look at a more detailed lab value source it breaks this down by gender. I'm not at home so I don't have my book at hand to tell you where you would fall on that. Males need to be very cautious with iron and I wouldn't supplement without some input from your dr. Have they ever done an occult blood test? Low ferritin in a young male would raise a red flag for me. I would continue to get some more diagnostic work done.

Good luck and keep pushing!

Where would one find the more detailed lab value source you describe? I tried googling for more information on the ferritin test, but it only gives generic information.

Just for curiosity's sake, I looked back at my blood tests as far as they go (2006), and I found that my Ferritin levels were low even then (41). So at least we know it's not a one-time dip.

I have never had an occult blood test done to my knowledge, but will ask my doctor next time I see him.

Thanks for all the help... much appreciated!

Geoff.

[Blitz]

There have been a few people on this board who were diagnosed with CFS and/or fibro; their symptoms disappeared with the gluten-free diet.

This doesn't mean the CFS and fibro can't exist separately from celiac (though I wouldn't rule that out, either); but it does indicate that at least some of the time, celiac/gluten intolerance can cause the exact same symptoms that result in those diagnoses.

CFS and fibro are SYNDROMES. That means they are collections of symptoms where the doctor can't figure out the cause--but there IS always a cause, even the doctors don't know what it is.

The way I see it, that means that management of symptoms is a very last resort. The first order of business (as you are doing now) is to find the cause or causes.

Mold exposure is another cause of otherwise unexplained symptoms, and so is exposure to chemicals (like, if you've recently had your home sprayed for insects, which can certainly have a toxic effect on humans).

I tend to agree with this way of thinking, because I was told for nearly 12 years that I had Chronic Mono or CFS and there was nothing they could do. It was only through my sheer persistence and research that I realized it could be celiac disease, and then prompted my doctor to do the blood screening test (then followed by the endoscopy/biopsy).

So, based on this history, I figure there's probably something else wrong here, perhaps related to being undiagnosed celiac disease for 12 years, or perhaps unrelated. Either way, we just need to find it so we can do something about it. Only Once I've exhausted every avenue available to me will I resign myself to "managing the symptoms", and we're not there yet!

Thanks for the support and advice!

Geoff.

[TrillumHunter]

I'm out of town and will be until Wednesday. The quick look I took online gave a level of 50-1000 for adult males. Values can vary slightly from lab to lab but I believe yours would fall below normal on any test. It is not low enough to be anemia but, and this is key, it is consistently on the low side of normal. Having struggled with anemia for years, make that decades, I know I cannot function well on the low side.

The occult test would look for bleeding, even slight, in the gi tract. It's easy and fast and they should be able to do it in the office if you can supply a sample, ie some poop.

Any chance you are athlete?

Before Mayo I would start looking for a hematologist locally.

[Blitz]

Do you know your thyroid levels? There have been some major changes in thinking over the last few years as far as what qualifies as hypothyroid. Although if you've been to endocrinologists, they would probably know about the new research even if most family docs do not. They used to say that TSH levels should be below 5, and they've recently revised that to below 3.

I would suggest requesting all your medical records and going through them. It sounds like they've done quite a bit of labwork (well, hopefully they did before telling you that you were "fine"). I know it sounds daunting, but sometimes there will be levels that are off and doctors will just ignore it for whatever reason.

Have you tried seeing another doctor? I mean, even if they can't find anything wrong with you, you clearly have chronic fatigue, which is a health problem on its own. It is possible that you also have another autoimmune disease like fibromyalgia or lupus. Apparently celiac patients are more prone to those as well :-(.

Lastly I would suggest stopping eating at restaurants. I know you said that you read ingredient lists, but I'm one that reacts very violently to gluten and most restaurants are not safe. I used to try, but I just kept getting glutened. I was assured that one restaurant had dedicated fryers for their fries and I reacted to it. Then I noticed that when they pulled up the baskets from the un-dedicated fryers, they dripped all kinds of oil into the dedicated fryers. Mystery solved. Anyway, I would suggest going on a super-clean diet for a couple weeks without eating anything that could have even remotely come close to gluten. Look closely at your over the counter drugs, pots and pans, toaster, shampoo, even your wife's lipstick. Before you shell out that much money, you need to triple check everything or you'll just be wasting money!

If you've done all that and still nothing then I would go to mayo. Life's too short to feel bad. I hope everything turns out okay for you!

Thanks for the reply.

I have copies of most of my lab tests, which I make a habit of asking for each time I visit to get results (if any). And yes, I have done all the normal thyroid tests several times. On last test TSH was 1.73, before that it was 2.00. But I'm still not convinced this isn't playing a role, as someone previously suggested that Adrenal fatigue can cause the TSH level to be low, even if you actually have low thyroid levels.

You mention shampoo... would that really cause a gluten problem? I thought it was only ingesting of gluten that caused the problem. I do occasionally handle gluten foods for the other person living here (my grandfather), but I never thought anything of it because I wasn't eating them.

Thanks for all the info and suggestions.

Cheers,

Geoff.

[Blitz]

Cutting out dairy, I think, is a must for the first few months of going gluten-free, as if you have damaged villi, those villi are not going to be able to produce lactase--and I remember reading that dairy can prevent gluten-damaged villi from healing!

Luckily, there are quite a few really, really good dairy-free milks out there, including rice milk (but NOT Rice Dream--it claims to be gluten-free but it's not), almond milk (my favorite!) and hemp milk (never heard of it before this year, but it's yummy--and I CAN drink regular milk!).

Your diet sounds awfully heavy on gluten-free breads and cereals. Most of us had to avoid those until our intestines healed, as they are even more difficult to digest than the gluteny originals (for different reasons, obviously). Can you sub plain rice and potatoes for the rice breads and cereals for now?

As for Mayo, isn't it full of doctors who are likely to treat you the same as your current ones?

I really don't eat as much rice bread as it sounds like... takes me about 3 wks to go through one of those tiny frozen loaves. And I have been doing baked potatoes (microwave style) a couple of times a week anyway, but only because I happen to like them.

Regarding Mayo, yes it probably is the same... but I'm just getting so fed up with my doctors here, with their reactive approach. It just drives you to grasp at straws. I wasn't planning on doing anything serious on that until Febuary at the earliest, if at all.

On a side note, I'm trying to go easy on white rice because I've managed to gain 25 lbs since starting my gluten-free diet... I'm now up to 205 on a 6' frame, which is officially the heaviest I've ever been in my life (normal for me was around 160-170).

Thanks for the advice...

Geoff.

[Blitz]

I'm out of town and will be until Wednesday. The quick look I took online gave a level of 50-1000 for adult males. Values can vary slightly from lab to lab but I believe yours would fall below normal on any test. It is not low enough to be anemia but, and this is key, it is consistently on the low side of normal. Having struggled with anemia for years, make that decades, I know I cannot function well on the low side.

The occult test would look for bleeding, even slight, in the gi tract. It's easy and fast and they should be able to do it in the office if you can supply a sample, ie some poop.

Any chance you are athlete?

Before Mayo I would start looking for a hematologist locally.

No, I'm not an athlete... and in fact I doubt I could run down the block these days. :|

I will make sure to ask my doc for the occult blood test next time I'm there, though I'm not sure I can poop on command, but we'll see.. lol. I mentioned this test to my mother, and apparently my Dad gets these on a regular basis to keep tabs on his ulcerative colitis... hrmm.

As I said, Mayo was kind of a last-ditch effort, which I wouldn't have done until probably March or so anyway. Thanks for the info!

Geoff.

[zeta-lilly]

Geoff,

officially the word is that you can't get have a reaction unless you ingest the stuff, but I personally go totally gluten free because I reacted to makeup. It's probably a lot easier for me to react because I'm constantly touching my face and my hair. Also, your dandruff will have gluten on it and if it accidentally falls in your food... The chance of it causing a reaction is pretty low, but I'm anal. Also, you said you're reading ingredient lists on soups and things. I've reacted to a lot of things that didn't list wheat byproducts as an ingredient. (like yummy white cheddar popcorn :-( )You don't have to call the companies, just google the name of the product and gluten and 9 times out of 10 you'll get your answer. It's probably overkill, but that's a hell of a lot of money to spend and I don't part with my money easily:-)

[Blitz]

Geoff,

officially the word is that you can't get have a reaction unless you ingest the stuff, but I personally go totally gluten free because I reacted to makeup. It's probably a lot easier for me to react because I'm constantly touching my face and my hair. Also, your dandruff will have gluten on it and if it accidentally falls in your food... The chance of it causing a reaction is pretty low, but I'm anal. Also, you said you're reading ingredient lists on soups and things. I've reacted to a lot of things that didn't list wheat byproducts as an ingredient. (like yummy white cheddar popcorn :-( )You don't have to call the companies, just google the name of the product and gluten and 9 times out of 10 you'll get your answer. It's probably overkill, but that's a hell of a lot of money to spend and I don't part with my money easily:-)

That's what I always thought, but it just occurred to me to ask. I always make sure to wash my hands thoroughly after touching any gluten item, but perhaps I should wear gloves just to be on the safe side.

And I don't part with my money easily either, especially the $3,400 USD Mayo wants for a deposit before I see them.. yikes! But 12 years of being sick has a funny way of making one consider options that they otherwise wouldn't.

Cheers!

[Blitz]

Well, just to update everyone...

I went dairy-free as of Monday, and also started taking an iron supplement. I was trying to avoid soy, but I realized yesterday that a few items I ate do contain it. I'll slowly wean myself off those by week's end.

For the iron supplement, my pharmacist recommended Palafer. I had her check if it's gluten-free, and she spoke to the company (GlaxoSmithKline) and they said they can't guarantee 100% gluten-free due to outsourced manufacturing, but they don't knowingly put any gluten-containing items in there. Has anyone had bad reactions to this brand (aside from constipation, which I've read is a common side-effect)??

Thanks for all the help everyone!

[pele]

Well, just to update everyone...

I went dairy-free as of Monday, and also started taking an iron supplement. I was trying to avoid soy, but I realized yesterday that a few items I ate do contain it. I'll slowly wean myself off those by week's end.

For the iron supplement, my pharmacist recommended Palafer. I had her check if it's gluten-free, and she spoke to the company (GlaxoSmithKline) and they said they can't guarantee 100% gluten-free due to outsourced manufacturing, but they don't knowingly put any gluten-containing items in there. Has anyone had bad reactions to this brand (aside from constipation, which I've read is a common side-effect)??

Thanks for all the help everyone!

There is a gluten-free version of Floradix.