Hidden gluten allergies and nerve diseases
AnonymousSeptember 26, 2007 at 9:58 am
I posted some info about a curious topic that came to my attention a few weeks ago and I wanted to share it with everyone. I am 34 and have had what we think is CIDP but no one really knows. I started with weakness in my left lower leg (calf) that eventually atrophied and then progressed to my right leg then my left arm. I am in chronic pain and have lots of twitching. I wear braces for drop foot and I have filed for SSDI because things are getting worse. After some research and talking with a relative she hooked me up with a “Functional Medical Doctor”
Long story short…
After sending in stool and urine samples I have Coeciacs disease without the GI problems, thats why I ever noticed it. This means I am allergic to Gluten and Gluten is in everything we as Americans eat. I am in the process of ordering supplements as well as going gluten free.
I would like to know if this affects anyone else? I googled Celiacs disease and neuopathies and couldn’t belive what I found. I am looking for any indication that others with CIDP have the same issue. Is there anyone who has gone gluten free and has it helped???
If interested PM me and I’ll share the Doctors name and contact info.
AnonymousSeptember 27, 2007 at 1:46 pm
I have been through heck and back. MY original neurologist thought I had a rare form of GBS in March after a severe case of food poisoning. Then traditional doctors and neurologists told me it was conversion disorder since my symptoms kept getting worse over time?!!?!?! The dr’s just don’t know!
I won’t bore you with the details of what I’ve been through the past 7 months, unless you want me too!
I gave up! I started seeing a naturopath and now a new physician who had medical problems of his own and was sick of traditional medicine! Anyway, I did the “elimination diet”. I found that dairy, egg yolks, beef, and pork ALL caused my neurological symptoms to flare up! I never had problems before! My new dr. brought up so many factors that other dr.s totally missed…even environmental issues.
I am now following the Swank MS diet – I have a friend with MS and swears by it. I don’t get to “eat out” much due to my strict diet. :*(
I’ve been curious to know if people with other autoimmune disorders have benefited from dietary changes…I guess you prove it! This has me optimistic that I don’t have MS. My new drs are thinking it might be MS.
I don’t seem to have an issue with Gluten. I was just tested last week for Celiac disease and am in “the process” of my GI test ;0) along with other numerous test – the IGG food antibodies being one.
I do have tingling and fatigue that I can’t seem to kick. I have been eating raw/organic fruits & veggies, & soy mainly.
Please keep us posted & I’ll let you know what my test results are!
AnonymousSeptember 28, 2007 at 4:13 pm
Out of curiosity I googled Guillain Barre diet.
I was shocked when I read the first “hit”.
I don’t know if we’re allowed to send “links” here, but it was an australian health yahoo site. At the bottom of the page, there is a diet tip section. Wouldn’t you know it -the foods that flare up my neurological symptoms are the pro inflammatory foods – dairy & animal products.
Wish I had known all of this when I was originally diagnosed with GBS. I could have saved time, money,etc..(10 IVIG’s & 2 PE’s with limited success)…not to mention getting my symptoms controlled sooner!
AnonymousOctober 2, 2007 at 8:24 am
Among other things that went wack with my body from GBS i.e. Thyroid. I couldn’t figure out what was wrong with my belly post Gbs. I never had problems before. Well, what the doctor discovered was that I had gluten allergies. Could Gbs have caused this? It.s sooo hard to give up Ledo’s pizza, so I take the chance every once in a while and wait for the consiqunces. Thanks for posting. xoxox Roxie
AnonymousOctober 3, 2007 at 5:43 pm
I think this is an amazing post. Dell is 3 and has cidp.
He’s been tested for lots of things but cows milk came back very high. He has been cow milk free for about 5 months but we have not seen an improvement. When he drank milk, he had no adverse reactions, no rashes, no stomach problems it was just the blood test that showed positive.
I would like to hear more about ppl. going on diets. It’s hard to put a 3 year old on a diet. The milk hasn’t been bad at all, I just stopped cooking so much with cheese.
I would ask the forum participants to keep posting about their progress with diets.
AnonymousOctober 4, 2007 at 11:15 pm
Michael, Rebecca, everyone,
I think many people wind up being treated for a so-called illness while it is our diet that is causing it. The medical profession scoffs at ideas about food being the problem. I totally recommend reading the book LIVE RIGHT for your BLOOD TYPE. Libraries carry it. It tells you what foods are medicine, netural, or bad for you. A member of this post pooh poohs it but I have found it to work. I am an O blood type and eating soy caused me to lose most of my vision in my one eye. I stopped the soy and it stopped in a day or two. WHat doctor would have found the relationship?? WHo knows what would have happened to me had I not found sy to be the culprit? I would have been put through tests and on mediciations and I would have continued eating the soy. Sometimes I wonder if we just adjusted/tweaked our diets a little, then perhaps we would not have to give up Pizza entirely! Maybe the gluten is the final straw. It wouldn’t hurt to check out this book. See if you could add more GOOD foods to your diet to strengthen your body.
AnonymousOctober 5, 2007 at 1:32 am
I have CIDP as well, but gluten doesn’t seem to bother me…however, like
Dells mom spoke of her son having a problem with milk, I seem to have that
as well – not lactose intolerant – I can’t really feel my best with it.
I definitely agree that our diets have done some damage, whether it be some
specific foods or the preservatives or chemical coloring, or even sugars.
LOL…Yes, Carolyn, I guess I’m the one you referred to as “pooh poohs” the
book you recommend. The reason I wasn’t thrilled about it, was because:
1. Author presents himself as a doctor (he took a few naturopath classes)
He isn’t a doctor.
2. In the case of Type O blood, “he” recommends no grains or fiber be in
3. He states to stay away from assorted other necessities to help your diet.
Everyone needs fiber to clean out their intestines. It removes built up
mucus and petrified feces – otherwise you could end up with colon cancer or
diverticulitis. There was something else he stated in regards to thyroid
problems that occur in type O people. I forgot…it was crazy.
I’m all for health through diet, be it with naturopaths or doctors…however,
there are several nutritionists and doctors that don’t believe a word that guy
states. It is true that most doctors only have a few hours in classes about
nutrition, so they are not so quick to know about the subject.
It’s great that we should all lists the foods that give us any problems…I did
not even think about the milk until I saw Dell’s mother post it.
Carolyn, it’s okay to use my name in referencing that I find the blood type
book to be ridiculous…believe me, if it works for you, please continue…I’m
not angry or upset – we just have different opinions on the book – but your
insight to alternative health in regards to what we eat, I wholly support and
agree with you. 🙂
Mike, please pm me with the doctor’s name…
Hopefully others will post from having CIDP, what they have found to be a
problem in their diets…it helps with educating us as to what to look out for.
Miami Girl 😀
AnonymousOctober 5, 2007 at 3:34 pm
I tried a gluten free diet several years ago because I was having some undiagnosed digestive problems. OK, I admit it, just about everything I like has gluten in it and just about everything I don’t like is on the safe list. I gave it four months and was totally miserable the whole time. I don’t do much dairy and haven’t since I was a child. I well remember drinking goat’s milk as a child and thinking it one of the nastiest things I’d ever had. I had lots of soy milk too but eventually my mom gave up and let me drink juice instead. As an adult, before the advent of Lactaid milk I drank rice milk alternating with soy milk. Now both my husband and I drink only Lactaid milk and eat only Lactaid ice cream. I know I have a dairy problem but I REALLY don’t want to have a gluten problem. Still, now that I read this thread I can’t ignore the possibility so my question is “how do you get tested?”
AnonymousOctober 5, 2007 at 7:26 pm
Just to add one more voice to this discussion, here is a recommendation from Dr. Weil for all types of autoimmune diseases:
[QUOTE=Dr. Weil]● Decrease protein intake toward 10 percent of daily calories; replace animal protein as much as possible with plant protein.
● Eliminate milk and milk products, substituting other calcium sources.
● Eat more fruits and vegetables regularly and make sure that they are organically grown.
● Eliminate polyunsaturated vegetable oils, margarine, vegetable shortening, all partially hydrogenated oils, and all foods (such as deep-fried foods) that might contain trans-fatty acids. Use extra-virgin olive oil as your main fat.
● Increase intake of omega-3 fatty acids.
● Take black currant oil or evening primrose oil capsules as sources of GLA (gamma-linolenic acid), an essential fatty acid that improves the health of skin and hair. The usual children’s dose is 250 mg twice a day. [/QUOTE]
In my family, my daughter has cidp, another daughter w/lactose intolerance & chronic allergies, my niece has coeliac disease, I am a vegetarian, and my father, 84, has special dietary concerns – put us all together for a family meal, and it can become quite a challenge. Over the years, I put a lot of time and engery into trying to understand food and its effects upon health. The suggestion by Dr. Weil seems to take a realistic and doable approach. I don’t think you can “eat right” and expect to see a tangible effect upon the autoimmune part of this illness, but diet can have a significant effect upon the inflamation.
The suggestion to eliminate polyusaturated vegetable oils, etc has been documented as a major contributor for inflammation and disease. Here is an excellent (and somewhat technical) report.
(note: the link is to a scientific site, and the server is somewhat slow. If it times out, copy & paste the link into google and click on the cache link for reading)
It takes a long time to get through the whole article, but it does provide a good understanding of the contribution diet makes on chronic illness. For those who want it in a nutshell:
n-6 pufa found in many vegetable oils – “contribute to the formation of thrombi and atheromas; the development of allergic and inflammatory disorders, and cell proliferation.”
n-3 pufa found in fish, flax, walnuts, leafy green vegetables – ” have anti-thrombotic, anti-chemotactic, anti-vasoconstrictive and anti-inflammatory properties.”
I belong to vegetariangf (yahoo group) that has helped me bridge our different dietary needs. Learning to make adjustments has made me much more aware of how much our diet can help or hurt our bodies. Hope I haven’t bored you to death with all this detail: mabe it has helped a little.
AnonymousOctober 5, 2007 at 8:33 pm
Celiac Disease is an incredibly easy condition to be tested for – it’s just a blood test!!
Actually, step one [I]should[/I] be this cheek swab test to test to see if you even have the gene. But this is costly and as 40% of people have the gene anyway, may doctors ignore it and move on to celiac dx step two…
a really simple blood test checking for a few immune abnormalities. If you have them all come back positive, then you’ll be scheduled for an endocopsy so a GI can biopsy your stomach and check it out for supressed villi.
In my case, not all of my blood tests came back positive but I’d been having such severe stomach problems since I was four that my doctors still felt celiac was likely. And hey, it ended up being there. Depending on case/symptoms/agressiveness of doctor an endoscopy might be taken with out all blood tests being positive.
The important thing for these tests though is don’t, DONT!, go off gluten before hand! It will tottaly skew the results.
So yeah, getting tested is (realitvely) painless, (realitively) easy, and when 1 out off 133 americans has celiac disease but only 3% of them know it, it’s tottally worth it.
AnonymousOctober 6, 2007 at 5:32 am
In that case I think it’s likely I’ve been tested for Celiac disease – I had a thorough rheumatological workup to try to discover the cause of the fever and nothing showed up abnormal except the MTHFR enzyme mutation. I’m going back to that doctor in a few months though so I will ask him to make sure we eliminated it. Do you know the specific tests they run? I’ve got a spreadsheet of all the tests they ran on me and the results so I could look it up…
thanks again, I’m keeping my fingers crossed I don’t have to give up fresh baked bread!
AnonymousOctober 8, 2007 at 4:27 pm
I love this post. If I would have ever finished college, I would have loved to have been a diatician. I love food and what is does to a body.
I would like to have Dell tested for food allergies. We are still battling the butt issues. I probably put cream on him 6 times a day. I think it’s because he’s not potty trained and because of the weekly solumedrol infusions.
I need to check Dr. Weils’ book out of the library. I have also read about the bloodtype diet. Only thing I can say is, “how could I ever give up bananas.”
There is a new immuologist/allergiest in town and think I will make an appt.
AnonymousOctober 8, 2007 at 8:31 pm
You are so right about bananas…they are considered the nearest single food
item that carries a multitude of benefits…fiber, B-6, potassium, plus they
help lower cholesteral…only 90 – 100 calories each, depending on size.
They outrank milk in benefits.
AnonymousOctober 10, 2007 at 3:35 pm
To all that have posted a reply,
I want to clarify that I do not have any GI problems nor any symptoms of celiac disease. I have only had my stool and urine checked and it shows 3x the levels of gluten (or the protein) however its read by the lab. Anyway as a test, because I’ve tried IVIG and all other types of meds out there over the last 13 years, I am giving this the college try. For those who are interested you can contact
100 South 2nd St
Sartell MN 56377
I am drinking a millkshake product to cleanse the gluten and probiotics as well
as my gluten free diet. It’s not that bad and I hope that I have a positive experience to report to everyone. Thanks for all the responses
AnonymousOctober 27, 2007 at 11:48 pm
If you get a chance, check out two new books: Good Calorie Bad Calories by GAry Taubes. The title sounds like it is like all the rest. But the author was on The Larry King Show with Dr. Mehmet Oz who is often on Oprah. Dr. Oz said that doctors should read this book. It looks at what we eat in a totally different way. The author goes back and shows why many of our beliefs in food and medicine are wrong. It is eye opening.
The second book is Survival of the Sickest by Dr. Sharon Moalem. Dr. Oz calls this book, “Fascinating.” It is another eye opener. It is filled with cutting edge insights and easy to read. The author “demonstrates how little modern medicine really understands about human health.” I can’t put the book down.
AnonymousJune 27, 2008 at 2:22 am
I have had a painful, small fibre neuropathy and chronic pain from acute renal failure that was dx as CIDP in 2000. I have had ongoing problems keeping my calcium, vit d and wbc within the normal range, my neuro reckoned I had malabsorption of some kind. I lost 20kgs with no particular reason. Anyway – long story – I just saw an endocrinologist who thinks that I may have celiac that is actually the ROOT CAUSE of the CIDP problems.
Apparently, celiac can be set off by a trauma or a virus of some kind in adults. Having undiagnosed celiac can lead to peripheral neuropathy, and other kinds of damage. On the forum we have talked about celiac and CIDP – he is suggesting only celiac – no CIDP. We have done bloods, etc and will do the biopsy if required, but I thought that it was very interesting. I don’t particularly have the obvious celiac symptoms, so it has been the nagging abnormal bloods that have triggered this discussion. I don’t eat alot of gluten now – but who knows?
I will keep you posted as to results.
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