CIDP and Celiac Disease

My daughter gets many of those same stomach symptoms & we’ve determined that it is from the IVIG. She’s get ALOT of it. 20g two times a week.

Whenever her stomach starts to hurt we give her 1/2 of a Gas X pill (she’s only 5 though). That seems to be helping with the bloated feeling.

We’ve found that for 1-2 days after an infusion she will have diarrhea off & on. It will then go away for the rest of the week until her next infusion.

Celiac’s is a possibility as well. Make sure that you talk with the dr about it. I know that we considered it at one point with Emily along with lactose intolerance.

Kelly

Hi Brian,
Its a simple series of blood tests. I have a son with tye 1 diabetes and hashimotos (more autoimmune dieases) and he gets tested for CD every year or so — its routine because co-occurences are frequent. I developed hashimotos when I was 20. Autoimmune disease and IGA deficiencies go hand-in-hand, so be sure to ask them to test your total IGA at the same time. The ttg tests for CD are run on IGA proteins. And start eating wheat again before the tests, or the results may be skewed, especially for a follow-up endoscopy. I am actually on an “anti-inflammatory” diet prescribe by my neighbor’s ND — no meat, no wheat, no dairy. Its basically a vegan diet. Its in a book called Eat For Life. Can’t remember the author’s name. Its a six week program.

From
Neurology
May 27, 2003 (Volume 60, Number 10)

Celiac Neuropathy
Chin RL, Sander HW, Brannagan TH, et al.
Neurology. 2003;60(10):1581-1585

Celiac disease (CD) is classified as a chronic inflammatory enteropathy that results from sensitivity to gluten ingestion. Neurological dysfunction can result and occurs in approximately 10% of affected individuals. The most common neurological complications include ataxia and peripheral neuropathy. Chin and colleagues conducted an analysis to determine clinical presentation and incidence of CD in patients with neuropathy.

The medical records of all of the patients with neuropathy and biopsy-proven CD from July 1, 2001, to June 30, 2002, were reviewed. In total, 20 patients with neuropathy and biopsy-proven CD were identified. The majority of the patients had sensory neuropathy and normal or mildly abnormal electrophysiologic studies. Of the 20 patients, 6 exhibited only neuropathic symptoms without gastrointestinal involvement, and neuropathic symptoms preceded other CD symptoms in an additional 3 patients. The clinical presentation included burning, tingling, and numbness involving the hands and feet with distal sensory loss. Nine of the patients had diffuse paresthesias of the face, trunk, or lumbosacral region, whereas only 2 patients developed weakness. The sural nerve biopsies (from 3 patients) demonstrated mild to severe axonopathy. The results of the agglutination assay revealed 13 (65%) of the patients were positive for ganglioside antibodies. The authors emphasized the common association between CD and sensory neuropathy and urged clinicians to consider the diagnosis even in the absence of gastrointestinal symptoms.

Attached is a good article on the subject and one persons experience.
Hope I can attach the PDF correctly. Never done this before.

No file is to large. If you want I could e mail you a copy. It is an artilce by Dr. Norman Latov research treating Neurologist at Cornell…it is in adobe format ..so if you want just send me a e mail to [email]PRCGENE@AOL.COM[/email] and I will send it to you.

Eugene

Here’s another good one…

“Celiac.com – The Neuropathy Association — On May 27, 2003 a link between Peripheral Neuropathy and Celiac Disease was reported by physicians at the Weill Medical College of Cornell University and New York Presbyterian Hospital, according to The Neuropathy Association. Peripheral Neuropathy, which affects up to 20 million people in the U.S., can cause pain, numbness and weakness in the arms and legs and, when left untreated, can progress to debilitation.

In an article published in today’s Neurology, five percent of all patients with neuropathy were found to also have celiac disease, which results from an allergy to gluten in bread and other wheat products, and is estimated to affect one out of every 150 people. “Based on the diagnosis, we are now able to treat a substantial number of patients with neuropathy who previously could not be helped,” said Dr. Russell Chin, the first author of the paper.

In addition, patients with celiac disease tended to have a type of neuropathy called “small fiber neuropathy” which often causes severe burning, stinging, and electric-shock like pains, but is often misdiagnosed as it is undetectable with routine tests used by neurologists to diagnose neuropathy. Approximately 16% of all patients with small fiber neuropathy were found to have celiac disease. “Many of our patients were told that there was nothing physically wrong with them, and were advised to seek psychiatric care for presumed anxiety or depression,” noted Dr. Norman Latov, Medical and Scientific Director of The Neuropathy Association, and senior author of the study. “You too would be anxious and depressed if you were in constant pain, and no-one believed you or offered to help.”

Celiac disease is known to run in families, and in several of the cases, other family members were affected. Some were erroneously diagnosed with Charcot-Marie-Tooth disease, an inherited form of neuropathy due to genetic mutations. “Not all familial cases of neuropathy are due to Charcot-Marie-Tooth disease,” noted Dr. Latov. “Peripheral neuropathy can also occur in association with other causes for neuropathy that run in families, such as diabetes or autoimmunity, for example.”

The article also notes that one third of the celiac neuropathy patients did not have any gastrointestinal symptoms such as mal-absorption, abdominal pain or diarrhea, which are associated with celiac disease. “What many people don’t realize,” notes Dr. Peter Green, Director of the Celiac Disease Center at the New York Presbyterian Hospital, and co-author of the paper, “Is that 50% of adults with celiac disease have few or no gastrointestinal symptoms, and present with other manifestations such as anemia, or as in this case, peripheral neuropathy.” Treatment consists of eliminating gluten or wheat containing foods in the diet.

At present, patients with neuropathy are not routinely tested for celiac disease. Based on the new study, however, patients and physicians should be aware that anyone with unexplained neuropathy or pain should be tested for celiac disease regardless of whether or not they have the classic gastrointestinal symptoms”.

Brian, judging by the dates, these articles are related to each other. How cool that your neurologist is one of the authors!!

I’m so glad this thread was started as all my life i have eaten whole wheat and oatmeal as i was taught whole grains are healthy.For the last couple of yrs when i eat oatmeal i get cramping in my arms, hands and legs about an hour after consuming and lasts for about 3 to 4 hours. You guys got me thinking….

take care !! Ericc….

Hi Brian,
I just thought I would throw in the possibility of something else happening.
I have CIDP, (official dx in Jan.06, though went through hell for 3 years prior before they came to the final conclusion). I went through all the tests, (EEG, ECG, MRI’s, CT’s, etc., including a seral nerve biopsy).
Six months later, they wanted to see the progression, and did a skin biopsy. This showed that the CIDP was progressing, and that now had small fiber atrophy, which meant it was now hitting my autonomic system causing autonomic neuropathy. I had a bad flair in AUG06, in that I could not move my legs at all, arms very little, but most distressing was that I could not breathe well and unable to take deep breaths, (it had attacked the nerves controlling the diaphragm). Then it hit the nerves controlling the heart, with a pulse rate shooting up to 120-130, or down to 40-50. It also hit the bladder, and had to straight cath. myself until Urecholine helped contract the bladder until I was able to wean myself off the caths., though was told to watch carefully every 12 hours, and during a flair this wil happen again.
During the flair, I had great difficulty swallowing, sometimes even choking on my own saliva with it going down my windpipe.
I take plasmaphereses for one week monthly, and they gave me an early week of treatment to get me out of the flair, though some of the damage was unrepairable.
—
But, in OCT06, it hit the digestive system. (I was told it would keeping hitting different autonomic organs and processes as the disease progresses.)
Nausea was a constant companion, sometimes severe. I am alergic to the anti-nausea class of drugs, Phenothiazines, (e.g. Compazine, Phenergan, etc.), so I can only use Tigan, and for severe nausea, Zofran, (Zofran goes for over $20.00 per pill, and my insurance only allows me 9 pills per 30 days, so I use them sparingly).
What is happeing, is I now have total loss of appetite, eating a meal about every third day. I am losing about 1 pund every 2 days. When I do eat, the food goes into the stomach, and because it attacked the nerves controlling the stomach, the food now just sits there, thus causing the nausea.
It makes me feel bloated, and nauseous, sometimes severely. They now have me on Reglan 4 times daily, which empties the stomach, as well as Eurythromycin 3 times daily, (of which a side effect of this antibiotic is to empty the stomach), as well as Zantac 3 times daily.
Last month, they did another barium swallow test, and it confirmed everything the doctors were telling me. They recorded the test, and the two speech therapists that were there during the test, pointed out what was going on. It starts with the weakened swallowing process, with first some food or liquid having laryngeal penetration and pooling in the vallecula, (to put it in English, {lol}, the food or liquid goes toward the area of the windpipe and stays there with the possibility of going into the lungs). The disease has caused esophageal dysmotility, which means the passageway into the stomach is weakened, and is hard to get into the stomach, sometimes coming back up either having reflux into the pharynx, or even further coming back up causing vomiting or just simply going in and completely quickly coming back out.
I hate eating now, since I feel sick after a simple meal. The cramps are awful, I feel like I had eaten a ton of food, and the nausea is awful, (I have a huge supply of Tigan suppositories and my hand and glove are now a constant companion, LOL).
The doctors and my weekly speech therapist and home health care nurse, are all advising me to now get a feeding tube, since my hydration is now very decreased, as well as food intake is low. They tell me I can still eat if so desired, even with the tube, though the feeding tube guarantees the necessary nourishment that the body requires. I am still thinking about it, as I know it’s the next step toward, what my doctors have told me, (“get your affairs in order”). They also told me that it is now time to get a hospital bed, in that the head of the bed must now always be elevated, assisting the weakened digestion process. The main, and MOST IMPORTANT issue, is to keep the food or liquid out of the lungs, which causes infections, (I have been told by my Pulmonologist, that this is what is going to do me in–an infection of the lungs, where my body that keeps getting weakened, can no longer fight the infection off…they said to expect it to happen within the next 2 years, and describing where when a flair will happen, going on to a ventilator, and getting a severe infection from food or liquid going into the lungs). I have been given a pneumonia shot to help.
—
I know I do not have Celiac Disease, since I eat very little wheat products since I just never was that fond of bread. The nausea or cramps, etc. happen with ANY kind of food.
SO, I WANTED YOU TO KEEP IN MIND, THAT PERHAPS IT IS NOT CELIAC DISEASE. I could be so many other things, such as what has happened with the progression of my C.I.D.P., and it’s rampage through my autonomic system.
I have come to terms with my disease’s prognosis, and I think still waiting it to “hit me”, since I still talk to friends and family as if things are still okay…
*******************
But, I just wanted you to think of other things that could possibly be wrong with you. Your neurologist can confirm autonomic involvement through a skin biopsy, or you G.P. can confirm through the various tests, one being the Barium Swallow Tests.
I wish you luck in finding the culprit to your problems!
Ken Soden
Oceanside, CA
(KEDASO)

Thanks for the info Brian…One thing i’ve always have noticed with my CIDP is when i ate certain foods my feet got weaker.At first i though it was high carbs and felt better on low carb but low carb has no grains. Now i’m wondering about grains since i’ve always eaten them all my life for high energy and health food status and now with the leg and hand cramping and Gerd like symptoms when i eat oats (oatmeal) and burritos (wheat flour) if this is the cause of my disease. Interesting…..

Now to find a probiotic that will help restore the intestinal villi if this is what i have and take it from there.I think i read that whey protein and fish oils are good for the villi’s…thanks again…..ericc…

I find this very interesting and would like to bring it up to the top.

I have gone gluten free for 2 weeks now and noticed alot less pain, better foot rotation, strength, stamina, heartburn disappeared, flatulence is gone and less sinus issues(facial pressure and painful eye movement), more energy and best of all no more napping. I Was getting 9hrs sleep at night with a 2 hr afternoon nappy. Now 6 hrs and I’m good.

Tried Gluten free last February and swore it changed gears for my CIDP but after being tested for Celiac and anti gliadin being negative I went back to eating way too much bread.
Such a condition called NCGS-is when you test negative for celiac and its intestinal antibodies, but problems manifest themselves in different ways.

Recently my pain was increasing over the last 4 months, like the IVIG wasn’t working anymore. more burning, pain and sensory loss. I by accident went probably 18 hrs without eating anything much and noticed my pains were diminishing and I didn’t really need a pain pill. Blood sugar after eating was fine. so, Then figured I’d try gluten free again. Every day I felt better and better and better. So I am 100% convinced that gluten and my body do not get along. The PCP feels I may have made a positive discovery for my well being. For my body, this is one of probably multiple triggers.

This doesn’at change the fact that I Still have CIDP, nothing has changed there. but less inflammation throughout my body without bread and wheat gluten. We’ll see now over the months how this bodes for me and pain.Thought I’d share this. It may help someone painwise anyway.–Tim–

You guys,
Check out leaky gut, it is like celiacsa but also includes sugars etc. I responded to a thread by Ryans mom with more info. I am taking Kev to gastro shortly about this matter, will post when we get home.
Dawn

Kelly started a thread on Leaky gut. There does not seem to be any difinitive test for this either. I wonder if an endoscopy shows anything. When my daughter Kelly had her endoscopies that diagnosed her chrohns. the Dr. couldn’t get in far enough to see the action section affected but told me the intestine was puffy, swollen and quote “juicy” looking to him. So it goes to show you that even endoscopies are not alway definitive.

As always our best clues come from how well the patient responds to treatments.

So, Leaky gut sound like it would cause lots of inflammation. it appears to be a yeasty buildup that eventually allows toxins into the blood causing infammation.

I would think anyone who has ongoing uncontrolled infammation even after being treated for CIDP should look into this and gluten as well.

Both instances are controlled with what I would consider simply good dietary practice. Eat the minimum, avoid the bad stuff and be really skinny. I lost 5 lbs in two weeks without bread. holy cow. My grad wt was 165, I am now 195 and I was running 175 for 10 years in a row, while all I ate was liquid protein, meat and veggies and creatine. since I quit the big workout stuff and started eating what everyone else does, I’ve be miserably getting worse.
Sorry to bore you all. See Ya–Tim–

Glad I found this thread. I am not cidp, but did have gbs. I went gluten free one year ago to spead my recovery, which I felt had stalled. The difference was shocking. I had a gene test for celiac, and was NCGS. However, u. of Maryland is doing a lot of research in the area, and my gene type is now being looked at for a possible celiac cause. I had such success after going gluten free, that I worked through an elimination diet and identified corn and dairy as other problems for me. I have been dairy free for 9 months and corn free for 4. I finally feel like there is a chance I may have a full recovery. I’ll be checking back to this thread to see if others have gluten news.

Yes, thats exactly what happened to me. My recovery stalled for 4 months
and I always feel better when I don’t eat. that lead me to isolate food groups.
The pain started gong away like I took meds yet didn’t. I may ask about a genetic test as well. they are expensive though.
Dr.OZ just had a show on this yesterday, unfortueately I missed most of it b/c I was getting the infusion and working
at the same time–tim–