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

[Blitz]

There is a gluten-free version of Floradix.

Yes, I've heard of that... it's called Floravit I believe. But it's mighty expensive around here.. $26 for 250mL, $40 for 500ml (Canadian dollars). Not sure how long either of those would last though.

[zeta-lilly]

Did you ever decide if you're going to go or not? Are you feeling any better?

[Blitz]

Did you ever decide if you're going to go or not? Are you feeling any better?

Well, I did get the info from Mayo, and they have set a tentative date for me in early February. But I'm rethinking the wisdom of spending that kind of money, and have been trying a few changes around here.

For example, I've eliminated dairy where I can find it, started taking an iron supplement, and I've stopped eating at restaurants and using processed foods (okay, I had a baked potato at Wendy's once, but that's all). All I've got for my trouble so far is the worst week of fatigue and muscle aches in recent memory... but I'm not sure if that's from all the snow shoveling (gotta get the car out somehow) or the diet changes. In any case I'm hoping it will all pass soon.

I'm also going to do the home celiac test kit (not sure if it's sold in the US), on the basis that if it shows positive that means my body is still producing the antibodies, and thus I must be ingesting gluten somewhere accidentally. Oddly enough I've never succumbed to "cheating" on the gluten-free diet to date.

Thanks for your interest. Any suggestions are welcome.

[mftnchn]

Geoff,

I think it is important to rule out lyme disease, because the symptoms can be similar to celiac, and CFS and fibromyalgia can be misdiagnosed lyme disease. Check out the lyme disease thread on this forum, but basically the testing is best done by a certain lab because most labs have a false negative rate of up to 60% as I recall. Gluten sensitivity can be secondary to lyme disease as well. I happen to have both lyme disease and celiac.

You might find reading the cases on this doctor's blog interesting: Open Original Shared Link

[Billygean]

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 completely agree. Doctors do not understand CFS and therefore make stuff up. I had mono, it triggered celiac, I got horrendous CFS that has almost disappeared on a gluten-free diet. There seem to be so many people who have had mono and celiac.

Ferratin is iron so get some iron tablets - a little bit of anaemia can be quite bad to someone who is already a bit fatigued. What is your fatigue like? Is it sleeping a lot, or dizziness when you do things? Or absolutely ravenous like me!

[notes21]

Just an FYI, don't go to Mayo unless you are fully prepared that you may spend that large amount of money and learn nothing new. I had always heard that Mayo wouldn't stop until they found your problem, but I found that to not be the case. Because of all of the testing I'd already had done, when they found negatives on the bloodwork & biopsies for celiac, they just decided it was a motility disorder and didn't even suggest a gluten free diet (though they'd been sure it was celiac two days prior). I went on the diet myself three weeks after getting home when the medicine they gave me did not help my pain. I now have a $4700 bill to pay after insurance already did their part. I know that it bothers me so much because I feel like I'm paying for getting no help. The staff and everything were great at the clinic, but just be prepared that it could end up feeling like a 'waste' of money.

[debw11066]

Hi,

I see that it's been a while since you posted this, but I wanted to respond. I hope that you are still considering going to Mayo...

I am here at the Mayo Clinic, and I wanted to share my story with you.

After unofficially being dx'd with celiac by a naturopath early in 2008, I started the gluten-free diet with very limited success. I also went dairy-free and soy-free. I followed this diet very strictly for nearly six months. That said, I had negative biopsies and bloodwork over the course of three years. Nothing pointed to celiac. The diet did nothing but make me sicker, and make me lose more weight (60 pounds to date).

After three years of testing by my local GI, he finally sent me to Mayo. I've been here for almost three weeks. This place is truly amazing. Do not let others sway you from coming here. If you are still not feeling well, if the diet is not helping ease your symptoms, if your gut is telling you that there something physically wrong, come to Mayo.

The doctors here uncovered a physical problem with how my digestive system functions. It is completely manageable and treatable. I do not have celiac disease. I am not intolerant to gluten, dairy, nor soy. The Mayo Clinic has saved my life.

Please keep me posted on how you are feeling, and your decision on whether or not you will go to Mayo.

Debbie

[neesee]

Hi,

I see that it's been a while since you posted this, but I wanted to respond. I hope that you are still considering going to Mayo...

I am here at the Mayo Clinic, and I wanted to share my story with you.

After unofficially being dx'd with celiac by a naturopath early in 2008, I started the gluten-free diet with very limited success. I also went dairy-free and soy-free. I followed this diet very strictly for nearly six months. That said, I had negative biopsies and bloodwork over the course of three years. Nothing pointed to celiac. The diet did nothing but make me sicker, and make me lose more weight (60 pounds to date).

After three years of testing by my local GI, he finally sent me to Mayo. I've been here for almost three weeks. This place is truly amazing. Do not let others sway you from coming here. If you are still not feeling well, if the diet is not helping ease your symptoms, if your gut is telling you that there something physically wrong, come to Mayo.

The doctors here uncovered a physical problem with how my digestive system functions. It is completely manageable and treatable. I do not have celiac disease. I am not intolerant to gluten, dairy, nor soy. The Mayo Clinic has saved my life.

Please keep me posted on how you are feeling, and your decision on whether or not you will go to Mayo.

Debbie

Hi Debbie.....I'm glad the Mayo was able to help you. It sounds like you'll be back in the swing of things real soon. It was a good decision to go to the Mayo.

I do have a question. Didn't your Naturopathic Dr diagnose a gluten problem with stool tests? What did the Mayo clinic think about that?

neesee

[dizzygrinch]

Just an FYI, don't go to Mayo unless you are fully prepared that you may spend that large amount of money and learn nothing new. I had always heard that Mayo wouldn't stop until they found your problem, but I found that to not be the case. Because of all of the testing I'd already had done, when they found negatives on the bloodwork & biopsies for celiac, they just decided it was a motility disorder and didn't even suggest a gluten free diet (though they'd been sure it was celiac two days prior). I went on the diet myself three weeks after getting home when the medicine they gave me did not help my pain. I now have a $4700 bill to pay after insurance already did their part. I know that it bothers me so much because I feel like I'm paying for getting no help. The staff and everything were great at the clinic, but just be prepared that it could end up feeling like a 'waste' of money.

Hello, I would have to agree. I think it would depend on the specific GI doc you see. I went there about 10 years ago, had tons of tests, and was diagnosed with the famous IBS. I can tell you, Celiac and Gluten Sensitivity was never mentioned. I was given the lovely meds for cramping, and sent on my way. Dont get me wrong, that doctor was very kind, did run lots of tests, even heart tests, but never, ever even mentioned possibility of Celiacs. Im happy to say, that I have now been gluten free since October, and feel 70-80% better! And, I just seen a new GI doc, who even mentioned that just because blood test may show negative, even a biopsy, a person can still be gluten sensitive, as in my case. Just wanted to let you know, I feel your pain, dont give up!! I would just go gluten free and see how you feel. It was a miracle for me!!

[sbj]

I'm not sure if y'all are reading the original post. The poster has already tried going gluten free and it hasn't helped. He is losing faith in the Canadian medical system so he wanted opinions about going to the US - perhaps Mayo. To reply that he might not get results from Mayo so he should just try gluten free seems to be missing the point.

[debw11066]

Hi Debbie.....I'm glad the Mayo was able to help you. It sounds like you'll be back in the swing of things real soon. It was a good decision to go to the Mayo.

I do have a question. Didn't your Naturopathic Dr diagnose a gluten problem with stool tests? What did the Mayo clinic think about that?

neesee

Yes, the naturopath did dx a gluten issue via stool testing. However, after extensive additional testing by the doctors at Mayo, and by my following the gluten-free diet for six months with no improvement, it is pretty clear that I have no sensitivity to gluten. Not much more proof is needed than that, stool testing or not.

The GI I saw at Mayo was very open to the testing done by the naturopath, by the way. She looked very closely at the results, and we discussed them at length. She did not dismiss them in the least.

Debbie

[neesee]

The GI I saw at Mayo was very open to the testing done by the naturopath, by the way. She looked very closely at the results, and we discussed them at length. She did not dismiss them in the least.

Debbie

Thank you Debbie......I was really curious about how the doctors at a place as prestigious as the Mayo felt about stool testing. It's interesting! It's also not what I expected.

neesee

[Fiddle-Faddle]

Yes, the naturopath did dx a gluten issue via stool testing. However, after extensive additional testing by the doctors at Mayo, and by my following the gluten-free diet for six months with no improvement, it is pretty clear that I have no sensitivity to gluten. Not much more proof is needed than that, stool testing or not.

The GI I saw at Mayo was very open to the testing done by the naturopath, by the way. She looked very closely at the results, and we discussed them at length. She did not dismiss them in the least.

Debbie

You know, there are a few people floating around who have not improved on a gluten-free diet. Some have Lyme disease, I know one who had an intestinal bacterial infection that resulted in a positive biopsy-diagnosis of celiac, and some are diagnosed with refractory sprue.

I was wondering if whatever you were diagnosed with might be of interest to those who haven't improved--maybe it's something that they might want to research, if they can't afford to get to the Mayo clinic themselves.

I'm glad you were able to find answers.

[debw11066]

You know, there are a few people floating around who have not improved on a gluten-free diet. Some have Lyme disease, I know one who had an intestinal bacterial infection that resulted in a positive biopsy-diagnosis of celiac, and some are diagnosed with refractory sprue.

I was wondering if whatever you were diagnosed with might be of interest to those who haven't improved--maybe it's something that they might want to research, if they can't afford to get to the Mayo clinic themselves.

I'm glad you were able to find answers.

I would urge those who have not improved on the gluten-free diet to investigate any and all other options, especially if you have never officially been dx'd with celiac, as I never was (at least not by an MD anyway).

My official diagnosis from the Mayo Clinic is rapid gastric motility, due to scar tissue left over from multiple gastric ulcers I had years back. Since my dx, I have been taking two new medications, following new dietetic guidelines (nowhere nearly as strict as a gluten-free diet, not even close) - and, yes, I am eating all the gluten my heart desires. I am also eating dairy, eggs and soy, even though the same naturopathic stool testing showed I was intolerant to those as well.

Since my illness began, a little over three years ago, I have never felt better. My symptoms have all but disappeared. No diarrhea, no weight loss, no hair loss, no itching, no gas, no bloating... all gone.

The answer is not always celiac!

Debbie

[sbj]

Thanks, Debbie, for sharing this important message. Celiac is not always the answer.

[chatycady]

I too had trouble with the gluten-free diet (1.5 years) and was not feeling better. I found the Specific Carbohydrate Diet which was the original gluten free diet for celiacs created by Dr. Sydney Haas. If you are interested it's under the "leaky gut and other food intolerances" board. Check it out. It has been a blessing for me! I've been on it for 4 months and finally can say I have no more symptoms. NONE as long as I follow the diet.

Or you can do a web search of SCDiet. I hope you get feeling better soon.

[Blitz]

Hi Everyone,

Thanks to everyone for their input. I have been following along by email (those handy daily digests), but have been too busy to actually log in and reply. I ended up opting to postpone my Mayo visit to an as-yet-undetermined date.

I'm fairly sure I am celiac, given the positive Dx (blood test and biopsy), and the family history of it (cousin positive Dx, mother suffers IBS - never tested for celiac, etc.). Also, since being on the gluten-free diet I am gaining weight (a lot!). I wasn't thin before, but this seems to suggest something was wrong. However, as mentioned, I still feel totally fatigued all the time, and my energy level has been dropping year by year (for 12+ years).

I'm going to try to get an appointment with the GI who did the biopsy, and see what he thinks I should do. I'm also planning to get the results of my allergy test (2 years back) from my family doctor. I suspect a couple of possibles were missing, and if so I'm going to ask for another visit with the allergist.

Cheers,

Geoff.

[Blitz]

Well, just to update, we're now at 12 months of gluten-free and still no positive change. In fact, I feel more tired and spacey than I can recall in the previous couple of years. I went off dairy completely for a period of about 2 months, which had no effect on me, so I opted to start back up on that. Perhaps that was a mistake, but I'm not really sure.

On a slightly more positive note, I finally performed a celiac home test kit that I'd bought a few months back. The results came back as negative, which indicates to me that my body is not generating the antibodies to gluten, alas I haven't glutened myself. Now, I realize this is not definitive proof, however it is positive never the less.

My next step is to ask my family doctor to refer me back to the GI specialist who did the biopsy, and see what he thinks. I'm also considering trying out the specific carbo diet, which several people mentioned (although I had heard of it before).... although it sounds like a big pain in the a**, so I'm putting it off for now.

Thanks again to everyone for their contributions to the discussion... much appeciated.

Cheers,

Geoff.

[Tallforagirl]

Thanks, Debbie, for sharing this important message. Celiac is not always the answer.

Yep, you're absolutely right sbj. If only all ills could be cured by gluten-free diet, but unfortunately, it is not so.

[conviviality]

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

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.

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

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

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

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

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

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

Cheers,

Geoff.

Hi Geoff,

Have you had other allergy testing done for foods other than gluten? The reason I am asking is because when I was searching for a diagnosis for myself, I had a lot of testing done. I had tried a lot of different diets hoping to alleviate chronic fatigue and brain fog symptoms. I had a 200 food allergy test done and the results were shocking. I was allergic to over half of the foods tested. One of the more severe allergies was rice! I realize that other allergies are supposed to clear up when you go off gluten, but if you have been eating rice daily, as it sounds like you are, and you are allergic to it, you might still be having a reaction. I would never have known about the rice allergy if I hadn't had the blood test (from Lame Advertisement lab). I eat rice now but went off it for about 3 months. My fatigue has vastly improved. Maybe you should consider further food allergy testing (only from a lab like Great Smokies or Lame Advertisement though). It could be enlightening.

[mushroom]

Maybe you should consider further food allergy testing (only from a lab like Great Smokies or Lame Advertisement though). It could be enlightening.

I think Great Smokies changed their name to Genova.

[Wonka]

I had my adrenals (cortisol) checked by several doctors and was told that they were fine (the blood test tests for bound cortisol, they ordered an am cortisol and a pm cortisol). I was then tested by my Naturapathic doctor (I started to go to him after hearing him talk about gluten intolerance and Celiac Disease at a gluten free workshop. He is gluten intolerant and did his dissertation on gluten intolerance and neurological changes, he just seemed like the right doctor for me.), this test is a saliva test (four samples: 8am, noon, 5pm and midnight - this test measures available cortisol). The test showed that I was normal in the morning but by noon I had bottomed out. This makes sense, as I have energy in the morning but start to fizzle around noon or so. The test also showed that I have enough cortisol but that my body is not utilizing what I have. I was put on some supplements (licorice root, Vit B5 and Energen F) and told to go on a gluten free diet (already there, lol) and a hypoglycemic diet. My energy has been slowly improving since starting this regime.

I guess, what I'm saying here is, keep digging. Don't let the doctors do a bunch of test, say you are fine and wash their hand of you. Be a thorn in there sides until you have answers.

[Blitz]

Oh, no worries there. I haven't give up yet, despite everything...

I have an appointment in late April with a new Dr. who is an MD but also does some naturapathic medicine. The first appointment is a 1 hr consultation, so I should have time to go through all the details. And I think I'm going to make some notes so I don't leave anything out too.

Thanks for the support!

Geoff.

[Wonka]

I have an appointment in late April with a new Dr. who is an MD but also does some naturapathic medicine.

Excellent. You have the best of both worlds, a medical doctor who can order test, write prescriptions and make referrals, but also a Naturapathic doctor who understands the relationship between food and the body. Good find.