Gluten free

Non-Pharmacological Treatment Diet
1

So I signed up to a website called FoodIntol.com and coughed up 100 bucks with 6 months support (got a couple of rebates) to work out if there is an intolerance to a food going on besides the usual triggers. These people look like they know their stuff. Science-based all the way and she often refers to the literature in explaining the program. One of the reasons I think there is an intolerance happening is because of the mouth ulcers I always get. That is not a migraine related problem.

So first up was this matrix thing I filled in which scored highly in two areas to get some idea of where to start. Initially I was going to target dairy but over the last 4 days things have really gotten mega crappy since gorging on tons of fresh-baked bread and next to no dairy (by chance). I’ve been spiralling down slowly for 4 weeks but this last 4 days has been way off the charts with a permanent dizziness set in (since Wed and since the French sticks began). I’ve been keeping a detailed journal of food and symptoms for 9 days. There’s a definite correlation though it could be a fluke of course. Anyway, I have to give this a good proper go.

Any of you guys seen any link with gluten and feeling worse? I know this seems to be the buzz word these days but have to try something new considering I eat the stuff every day of my life.

S

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I haven’t noticed any pattern, but then how could I? As you say, the stuff is in everything we eat so it’s not as if we are ever free of it, unless we go on a strict gluten-free diet.

There have been many reports of cases of cerebellar ataxia linked to anti-gliaden antibodies even when none of the classic coeliac symptoms are present. I’m not sure how strong the scientific evidence is, but since CA can sometimes mimic MAV, it’s worth looking into. I was tested about 3 years ago and came back negative, so I think it’s unlikely in my case. There are other forms of gluten sensitivity though.

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Hi Scott - I applaud your efforts to try to trace food intolerances. That is exactly why I’ve been working with an allergist since last November. I have whippy reactions to most grains and can tolerate some wheat products but not many (I’m careful with the gluten especially) though I’m not allergic per se. Then there are the dairy products and byproducts. It can get very dicey.
Let us know what you discover. I have had good luck with digestive enzymes, but they sure don’t cover outright heavy intolerances or allergies.
Hang in there on your new job transition.
Gail : )

4

i just spoke with a new co-worker the other day who declined pasta at a work party and i kindly asked her why and she said that she personally noticed that whenever she ate wheat products, they gave her headaches and just didn’t make her feel well so she only ate gluten free products. That definitely raised a question in my head and might give it a go myself?

Not sure how it is in Australia, but in California, things are for sure gluten-free friendly! Products are popping up all over the place and is becoming more readily available and less expensive as it was a few years ago.

Good Luck!

5

Thanks for the replies everyone.

In a total 180 degree turn, the people at FoodIntol told me to stick with dairy first given the following flow chart:

ANSWER THIS: Do you get recurring Yeast (Candida) fungal infections like thrush, jock itch, ringworm or tinea? •
• If YES, then investigate Yeast first.
•• If NO – Do you get frequent diarrhea? (Say every day?) ␣ If Yes - investigate Fructose first ␣ If No – investigate Dairy first.

She said the following to me despite my above observations:

Hi Scott - many breads also contain dairy - and in our experience with thousands of members - many suspicions turn out to be incorrect.
If your answers to the questions at the front of the Journal (above) led you to Dairy for your first investigation - then stay with that.
Re soy - you don’t need to drink it - why not try other foods for a short while?

Eliminating trigger foods is not indicative of anything - the underlying cause is still unknown and could still be dairy - and it is by far the most common intolerance - despite many people’s original suspicions.
We have researched this method extensively - and it works well.

So … back to dairy for me. I’m going to listen to the pros here and stay dairy clean for 14 days as per the program and then introduce a big dose of dairy on day 15 to watch the result.

Scott

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Hey Scott

When you mentioned French sticks it made me wonder whether it’s the fresh yeast rather than gluten that’s a trigger for you. On my ‘dodgy foods list’ from Dr S it says ‘fresh yeast’ as in fresh bread. Older bread’s ok as is pasta etc.

Anyway good luck with the dairy. Dr S’s list also avoids dairy. I’m finding this hard as dairy sneaks into lots of things eg ‘whey protein’. And I really miss butter! I’m using a lot of Oatly and Rice Dream. The latter works ok in cappuccino as in it froths up quite nicely!

Dizzy Izzy

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Hey D-I,

Good point about the yeast. That’s another intolerance I’ll have to investigate if dairy is a dud. It’s on the list of Food Intol’s plan. The big 4 are gluten, dairy, fructose and yeast. Dairy is numero uno with some 75% of the world’s population having troubles with it in some way.

On another note, I’m seriously considering going back on Cipramil again after 3 years on the wagon. Paxil does nothing for MAV at the current dose (I can’t go higher) and I’m quite sure my quality of life was better on Cip despite the myalgia it gave me. Maybe there are other things I can do to reduce the myalgia I didn’t do before. I’m sure Cip made me more sensitive to food triggers as well which will suck but then maybe abolishing an intolerance will make all the difference. Who knows. I have to do something radical though because I won’t last in this job otherwise. The VV on ANY computer now is awful. I feel nauseated just writing this now. :shock:

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A lot of people I know are on gluten free for CFS, migraine etc. They are convinced it helps but not the whole story. I did the elimination diet for 3 months years ago (beef, rice and parsnips) and still got bad heads, but looking back, blood sugar was playing its part and I didnt know at the time. I would be testing out a pile of mashed potatoes then wonder why I went dizzy and ill soon after, it was blood sugar crash. I got blood tested York laboratories years ago for 160 odd foods and the two that came up were yeast and eggs. Its true I cant eat eggs (which is a shame because I love them). I dont eat much in the form of bread (which I love, who doesnt love a crusty roll!) or biscuits etc. as I bloat up and get the blood sugar drops, but I cant say that wheat etc. gives me worse heads. I went mad the other night and had large chunk coffee cake and my head was better than ever the next day. I just keep it to a minimum.

Christine

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Scott I am still rock bottom too, what the hell is going on? After months on insomnia, this last few weeks I cant get out of bed, my head feels like a rock stuck to the pillow. My calf muscles feel like they are going to cramp, I have mouth ulcer and now to top it all I have got conjunctivitus (how glamorous is that for going on holiday). I will spend the whole holiday in bed at this rate. :frowning:

Christine

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Christine –

So sorry you are going through such a bad time as well. I know when I’m contemplating a return to Cipramil that I’m pretty desperate. I simply cannot handle another week like this again. It will literally finish me off. The weather here has taken a sudden change to winter temps etc. Not sure if that’s a factor or just a coincidence. I really think the weeks and weeks of stress and maxing out this brain learning new stuff on the job (plus lights and perfumes etc) has finally caused me to hit the wall.

Have you had any “events” going on that is causing you to crash like this? It’s such a miserable bloody problem this migraine crap. Seriously, haven’t we paid our dues now? How much more are we supposed to take? Grrrrrrrrrrrrrrrr.

S

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Scott, I cant even think of anything particularly that has caused this crash. I have been doing b… all for 2 weeks trying to rest to get away. Then I thought I had better do a short 15 minute walk last night to get the circulation moving and I conked out when I got back. I do feel stressed (people mostly) but I dont feel its been enough to cause all this crap.

I am with you there, I think another med trial is on the horizon when I get back from this holiday (if I manage to get there) :frowning:

Seems once we go down, it takes a long time to crawl back out of the hole!

Christine

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Yup, I get the same thing re falling into the migraine hole. Sometimes when you’re in it, you just can’t get out again without some radical drugs. I suppose if I could just do nothing for the next 2 weeks I might pull out of this dive but then maybe not either. It feels locked in … and once the SSRIs pull me out, I’m out. Weird stuff.

Sorry your holiday is getting screwed up. It’s ironic isn’t it? Everyone thinks a holiday should make us better but they can have the exact opposite effect.

The one thing I do recall is how Cip was the one med I was on that allowed me to fly to Toronto and back with very little fall out. That was back in 2007. Every trip since then has killed me when on other drugs. I also drove up and down the west coast of Australia on it. Contrast that with my latest trip south to Atlanta which was a complete disaster on Paxil.

Anyway … bed time. I’ll be doing a lot of sailing tonight. :?

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Scott, we thought my oldest son (not the one with MAV) had ADHD, along with anxiety and chronic, low-level depression (with bouts of major depression). He also had frequent mouth ulcers, chronic non-allergic rhinitis, and odd itchy rashes (intermittent). Treating the various symptoms helped, but only as long as he was on the meds.

When he was in college, he developed what seemed to be IBS. He didn’t have medical insurance, so he was surfing the web, looking for things that might help. He started reading about celiac and other forms of gluten-sensitivity, and decided to go gluten-free for a month or two, to see if it helped.

It did. As long as he is absolutely strictly gluten-free, all those symptoms go away. The mouth ulcers, the rashes, the anxiety, the rhinitis, everything. His fine motor skills are even better when he’s off gluten. If he has gluten, it all comes back.

He has also learned, through trial and error, that he is lactose-intolerant, so he’s also now mostly dairy free. He can tolerate a little bit of cheese, and if dairy is a minor ingredient in something, it doesn’t bother him. Gluten, though, in any amount, makes his brain and body go haywire.

It’s amazing to me how much healthier he has become since he’s gone gluten-free and dairy-free. The gluten-free part is hard work, since contamination is such a problem. He has to be extremely careful about what brands of foods he eats, and he just about can’t eat at other peoples’ homes. But it’s worth the effort for him.

Good luck with your experiment. Whether it turns out that you have food intolerances or not, you’ll have learned something important. Knowing for sure that something is NOT a problem is good, too, if that turns out to be the case.

Mamabear

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For anyone exploring the effects of yeast, check out the works of Dr. Crook, The Yeast Connection. It’s a classic. Yeast usually accompanies wheat products in baked goods, but also forms in our bodies when an overabundance of simple carbs or sugars are eaten. It can be nasty. Dairy has it’s own dangers for many people often due to not only the enzymes/tyramine triggers but due to the antibiotics and processing - at least here in the U.S. So, Scott- you probably can’t lose by eliminating some of these for awhile trying to detect the problem. Mouth sores sounds like yeast to me. My CFS doctor places heavy focus on yeast problems because the symptoms of yeast infections mimic (supposedly) so many other conditions. Keep us posted! This is fascinating… sorry that you are the guinea pig. I know the feeling…
Gail : )

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Hi Scott,

Am sorry to hear that you are feeling extremly bad of late. I too am suffering quiet badly at the moment and am with you re the weather we are having being so dramatically cold all of a sudden in May. Am currently today on a sick day, due to the way that I am feeling of late. I just cant seem to handle at the moment what is going on with my head. Just to add to your conversation re gluten, I am wheat intolerant and it seems that the older I seem to get the more intolerant I am.
I was first diagnosed with a blood test a few years ago, so I stayed off wheat altogether. It took about 3 full months to have the total effects of the wheat out of my system staying on a very strict diet. So through this time, taking so long, I kept questioning the doctor that this was an intolerence, to which he said that havin g this for so long it takes a long time to get out of the system. After about the 3 month period, at that time, I could conquer anything I felt so good. My advice when trying to see if you are intolerent, or allerergic to different foods, is to trial for a longer period than just the fortnight that has been recommended. I do know, if I break out and have some form of wheat based product, I get worse, (my fault).
Of late, because I am worse as well, I am thinking that my wheat intolerence has landed itself to be gluten intolerent. I recently had a blood test which I tested very low for folic acid. Looking up this issue on the net, it came back with that it could be a cause of coelic disease (gluten intolerent), which of cause could be a factor why I am feeling so so bad of late. I and we have to be strong and our will power to keep going has to overcome the everyday problems that we all encounter, its just that some days I feel it is all too hard…I feel like I am crazy, depressed, cant stand up, rocking and rolling, panic attacks, I am falling apart .I new someone a few years ago who in the later stages of her life had depression quite bad, panic attacks etc and no anti depressant was helping her… She eventually was diagnosed with coelic disease. She went on a very strict diet and all her symptoms that she was having all went away.
Scott I do hope that the Cipranol helps you, have you been back to your doctor to get a blood test or an allergy specialist to check this out further by any chance ?

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Hey Scott,
Gluten intolerance seems to be the in thing to diagnose these days (usually by non-MD’s) and it saddens me to see many people go down the path of this restrictive diet unnecessarily. Products with gluten and whole wheat have a great deal of invaluable nutrition and dietary fiber and replacing this with gluten free alternatives often proves challenging.

Thankfully, there are blood tests (antibody screening as well as genetic markers) and of course the gold standard (endoscopy with intestinal villi biopsy) to find out for sure if someone is truly affected by gluten. I encourage you to see an MD and at the very least get the blood tests done.

Warmly,
Lisa

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Hi Lisa,

I did have some basic tests for gluten done (celiac) last year which came up as zippo. Some will tell you that an intolerance will not show in this way. Anyhow, I’m doing the dairy elimination now instead. I would love to know why I get mouth ulcers all the time – whether it has anything to do with an intolerance. But I’m with you Lisa – skeptical as ever.

BTW, I had a small hit of Cipramil today along with the Paxil and already I have a sore ass. :lol: Happens every time. Oh the joy.

S

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Hey Scott,
Good luck with the dairy elimation diet. As for the ulcers… did you ever see an oral surgeon or dermatologist? It could be the HSV virus so you might want to get tested for that. An antiviral when you have eruptions is found to be helpful in many.

Sorry with the cipramil. What is your pain like?

Good luck!!!
lisa

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Hey Lisa,

Cipramil always causes strange myalgia for me. So one of the most annoying is a sore ass from sitting in a regular chair. It kinda feels like a blunt object is jabbing me in the left cheek right now. In the end I keep feeling like I have to keep adjusting the way I sit. When I first took Cip back in 2004 none of this occurred at 10 mg but the minute I hit 15 mg the ass pain started as did all of the other weird aches and pains. Now any amount of Cip does this. I couldn’t handle sitting on my mountain bike either until I stopped using the stuff.

BUT, Cip is a MAV killer. I am going to play around with both Paxil and Cip to see if I can come up with an effective yet bearable cocktail.

S

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— Begin quote from “scott”

Dairy is numero uno with some 75% of the world’s population having troubles with it in some way.

— End quote

That percentage doesn’t sound right to me. If you take out East Asia (China, Japan, Vietnam, Laos, Cambodia, Korea and Thailand) - countries which eat almost no dairy - then you’re left with about 75% of the world’s population, who do eat dairy. I don’t think every single one of us have problems with it.

Big numbers and sweeping generalisations like that set my skep-radar off.