Roxanna

Thanks everyone. I have tried the gluten-free diet on my son. It made a world of difference. It was easy to try it because of my daughter and I have gluten problems. I have to admit that I am not having good results keeping him on the diet. When he goes out he always eats the wrong things and I can see a major down fall in his health. I worry about him, but I know I can't make the choices for him. I am sure gluten is his problem. Just wish I had known about this when my children were born. Roxanna

Happy Girl,

He has not been tested for it yet. I have written down the names and addresses of several doctors here in Mo. I am going to check out the work they do. I am also thinking about going with the mail in test. He has been so sick from the time he hit about six months old. He sat up early. He said Momma at six months and then lost all of his speech ability for years. He talks now but has a speech problem. I hope it is not to late to get him help. He really has a lot of the symptoms, but his bowel control is the thing that bothers him most. He has had all kind of treatment for it and nothing has worked. I am planning on getting him tested. Roxanna

Have his doctor run the full celiac blood panel. Open Original Shared Link

www.celiacdiseasecenter.columbia.edu for more info

even if negative, it would be worth it to try the diet, 100%.

Nancy,

Thank you. It does help. My daughter and I have gone through a lot of this already because we are gluten free. I am thinking that the whole family of five have the problem. Do you think that is possible? I know now that our house is pretty much gluten free the whole family is healthier. If we do go out and eat some where my husband and son eat gluten. My husband swells up and gets worse with his vomiting. He has trouble with many of the symptoms. My son complains that he can't think right and gets really sluggish. He sleeps a lot after eating. Not like your typical after meal nap either. A long time and has no energy. He has a speech problem and it gets worse also. I really think it may be gluten. The doctors have been looking at my husband for years and cannot come up with a reason why he vomits a lot. My son has been diagnosed with Hereditar Autonimical Neuropathy disorder. It all fits the gluten problem. Roxanna

My belief is that if it is something anyone suspects, trying the gluten-free diet is always a good idea. Eating this way is actually pretty healthy. So there's no real reason not to just give it a shot. If gluten has anything to do with anyone's problems, the inconvenience of the diet is worth it 100 times over.

I do think that getting tested is a good thing because if it is blood and biopsy positive celiac, it can be important to know. They can also make sure it's nothing else causing the issues. However, there is a high false negative rate and you can come back with completely normal tests and still have life-changing benefits from the diet. That's what happened to me. Normal tests, but my life completely changed within a short amount of time.

If he's already gone through medical testing, or you don't want to do that, you can always get testing through Enterolab. www.enterolab.com . There is some controversy about Enterolab because the research hasn't been published for peer review yet, but I think it's totally worth it. They also can check for sensitivity to dairy, soy, egg and yeast. Some people have severe reactions to these things as well.

Some people just try the diet. If you decide to go this route, you do need to go 100% gluten-free in order to properly evaluate whether it's gluten causing the problem. No gluten at all. You also have to make sure he's not getting it second-hand. For example, he can't touch something containing gluten, and then make his lunch. He would have to wash his hands before he touches his food. You also can't just buy a hamburger and take the bun off the burger. If the burger has touched the bun, or croutons have been on a salad, it is no longer gluten-free and would cause a reaction in someone with a gluten problem.

You also have to make sure his personal care products - shampoo, toothpaste, lip balm, soaps are gluten-free.

It sounds overwhelming at first, but it's easy once you know what you're doing and why you're doing it.

If you decide to do testing, read as much as you can here about going gluten-free. One additional benefit of testing is that it gives you time to learn all the details of the diet. If you decide to just try the diet, take some time to learn as much as you can here. For me it was frustrating because it took five months to get all my testing done, but I wanted to make sure it wasn't anything else (cancer runs strongly in my family). The benefit of that wait was that I was pretty much an expert on the gluten-free diet before I ever went gluten-free. Most people don't wait that long for testing, but a bunch of stuff got goofed up, so that's what it ended up being for me.

Well I hope that helped, and I hope he decides to give it a shot. Like I said, if gluten has anything to do with it, the effort will be well worth it.

Nancy

Can anyone answer this question. I have a 25 yr old son that has all the neurological sympotms of gluten sensativity. He has never been able to control his bowels. He has trouble feeling. He has many nuerological problems. The doctors just say that the loss of control is due to his not being able to feel. I think all of it has to do with gluten. Can someone give me any idea if it could be gluten. He is so embarrassed and doesn't know what to do.

I don't know if you are the right person for this question so I will reply to several notes. I have a 25 yr old son that has all the symptoms of gluten sensitivity. He has never been able to control his bowels. He has now began to lose weight and does not want to eat. I believe it is caused from gluten. Do you have an answer to if it is or not?

here is to a link for a search on celiac.com using "neurological"

https://www.celiac.com/st_sresults.html

here are a handful of journal abstracts about celiac and various neurological issues:

Curr Gastroenterol Rep. 2006 Oct;8(5):383-9.

Extraintestinal manifestations of celiac disease.

Hernandez L, Green PH.

Columbia University College of Physicians and Surgeons, Harkness Pavillion, 180 Fort Washington Avenue, Suite 936, New York, NY 10032, USA.

Celiac disease is an autoimmune disorder that occurs in genetically predisposed individuals as the result of an immune response to gluten. It is present in approximately 1% of the population. Diarrhea has become a less common mode of presentation (<50% of cases) than it once was. Other presentations include iron-deficiency anemia, osteoporosis, dermatitis herpetiforme, and neurologic disorders, mainly peripheral neuropathy and ataxia. Arthritis is commonly found in patients with celiac disease when systematically sought. Overall, autoimmune diseases occur more frequently (three to ten times more) in those with celiac disease than in the general population. A gluten-free diet is the standard of treatment, although its effect on some of the extraintestinal manifestations remains to be determined.

Acta Neurol Scand. 2006 Jul;114(1):54-8.

Anti-tissue transglutaminase IgA antibodies in peripheral neuropathy and motor neuronopathy.Mata S, Renzi D, Pinto F, Calabro A.

Gastroenterology Unit, Department of Neurological Sciences, University of Florence, Florence, Italy. masa@unifi.it

OBJECTIVES: The aim of the study was to investigate the occurence of anti-tissue transglutaminase antibodies (tTGA) in peripheral nerve disorders, and to correlate them with neurophysiologic findings and anti-glycolipid antibodies. MATERIALS AND METHODS: We examined tTGA immunoglobulin-A serum level from 220 patients with polyneuropathy (acute inflammatory: n=90; chronic inflammatory: n=56; non-inflammatory: n=74) and 110 with motor neuron disease (MND). RESULTS: Seven of the 330 neurologic patients (2.1%, six with polyneuropathy and one with MND) were positive for tTGA. Sixty-one of the 330 neurologic patients (18.4%) had slightly increased tTGA values compared with healthy controls. Increased tTGA values were associated with greater impairment of neurophysiologic findings, but not with the presence of anti-glycolipid antibodies. CONCLUSIONS: We found a high prevalence of tTGA reactivity in patients with peripheral nerve disorders or MND. However, we were unable to demonstrate an increased risk of celiac disease in these diseases.

Pediatr Neurol. 2005 Oct;33(4):292-5.

Successful treatment of epilepsy and celiac disease with a gluten-free diet.Mavroudi A, Karatza E, Papastavrou T, Panteliadis C, Spiroglou K.

Department of Pediatrics, 3rd Pediatric Clinic, Division of Digestive Diseases, Aristotle University of Thessaloniki, Hippokration Hospital, Thessaloniki, Greece.

Celiac disease is a gluten-sensitive enteropathy, which recently has been described in association with epilepsy or other neurologic disturbances. This study describes a case of a 7-year-old female with intractable-to-treatment epilepsy and late-onset celiac disease, who was treated successfully with a gluten-free diet plus antiepileptic therapy. It is important for children with intractable cases of epilepsy and weight loss to undergo screening for celiac disease.

Cell Mol Life Sci. 2005 Apr;62(7-8):791-9.

Mechanisms underlying celiac disease and its neurologic manifestations.Green PH, Alaedini A, Sander HW, Brannagan TH 3rd, Latov N, Chin RL.

Department of Medicine and Celiac Disease Center, College of Physicians and Surgeons, Columbia University, New York 10022, USA.

The extra-intestinal manifestations of celiac disease (celiac disease), including ataxia and peripheral neuropathy, are increasingly being recognized as the presenting symptoms of this autoimmune disease. Although there is a greater understanding of the pathogenesis of the intestinal lesions in celiac disease the mechanisms behind the neurologic manifestations of celiac disease have not been elucidated. In this article, the authors review the cellular and molecular mechanisms behind the histopathologic changes in the intestine, discuss the presentation and characteristics of neurologic manifestations of celiac disease, review the data on the mechanisms behind these manifestations, and discuss the diagnosis and treatment of celiac disease. Molecular mimicry and intermolecular help may play a role in the development of neurologic complications.

Gastroenterology. 2005 Apr;128(4 Suppl 1):S92-7. Links

Neurologic presentation of celiac disease.Bushara KO.

Neurology Department, Minneapolis VA Medical Center, University of Minnesota, Minneapolis, Minnesota, USA. busha001@umn.edu

Celiac disease (celiac disease) long has been associated with neurologic and psychiatric disorders including cerebellar ataxia, peripheral neuropathy, epilepsy, dementia, and depression. Earlier reports mainly have documented the involvement of the nervous system as a complication of prediagnosed celiac disease. However, more recent studies have emphasized that a wider spectrum of neurologic syndromes may be the presenting extraintestinal manifestation of gluten sensitivity with or without intestinal pathology. These include migraine, encephalopathy, chorea, brain stem dysfunction, myelopathy, mononeuritis multiplex, Guillain-Barre-like syndrome, and neuropathy with positive antiganglioside antibodies. The association between most neurologic syndromes described and gluten sensitivity remains to be confirmed by larger epidemiologic studies. It further has been suggested that gluten sensitivity (as evidenced by high antigliadin antibodies) is a common cause of neurologic syndromes (notably cerebellar ataxia) of otherwise unknown cause. Additional studies showed high prevalence of gluten sensitivity in genetic neurodegenerative disorders such as hereditary spinocerebellar ataxia and Huntington's disease. It remains unclear whether gluten sensitivity contributes to the pathogenesis of these disorders or whether it represents an epiphenomenon. Studies of gluten-free diet in patients with gluten sensitivity and neurologic syndromes have shown variable results. Diet trials also have been inconclusive in autism and schizophrenia, 2 diseases in which sensitivity to dietary gluten has been implicated. Further studies clearly are needed to assess the efficacy of gluten-free diet and to address the underlying mechanisms of nervous system pathology in gluten sensitivity.

That is exactly what happened to me for years. I would have vertigo for a few weeks or months. It would go away and come back. The many doctors I told about it ignored it. I was so frustrated. They just contributed it to my seizures. I have been gluten free for about a year and have not had one episode of it. Roxanna

Last night around 1am, I woke up very suddenly with the feeling that I was spinning/falling. I sat up in bed and it seemed to ease a bit, although I still felt very dizzy and nauseous. As soon as I would lie back down it would start again. It was so scary, it literally felt like I was spinning very quickly and falling, and my eyes would start jerking around and I couldn't focus.

I tried to get up and move around a little, and that helped, although I still felt very dizzy and couldn't walk in a straight line. This whole thing lasted over an hour, until finally I reached the point where I could lie down without feeling like I was spinning quite as much.

This morning (after a little online research) I realized that this was vertigo. (From WebMD: Vertigo is a feeling that you or your surroundings are moving when there is no actual movement. You may feel as though you are spinning, whirling, falling, or tilting. When you have severe vertigo, you may feel very nauseated or vomit. You may have trouble walking or standing, and you may lose your balance and fall.)

I had heard the term before, but didn't really know what it was. And although it seemed much better when I first woke up this morning, at the moment I'm back in bed because I'm having nausea and the spinning sensation again (not as bad as last night, but enough to make me run into things when I try to walk!)

Now I'm just trying to figure out what is causing it. There seem to be a bunch of different inner ear & neurological issues that can cause it, but of course my first instinct is always to suspect that it has something to do with my celiac and/or thyroid problems. Have any of you ever experienced this? Any ideas on if/how it could be related to my other problems? Ordinarily I'd go straight to the doctor because this seriously freaked me out last night, but I just started a new job and my insurance hasn't kicked in yet. I'm already up to my ears in past medical bills.

Thank you in advance for any help you can offer...

-Sara-

Yeah, I would say I am just about where you are. Although, I did feel great fairly soon, within 3-6 months. So I know how good it CAN be, now I just have lots of not-so-great/bad patches I assume are from mistakes.

But I also think some of the fatigue and other stuff is candida related. When I first started the gluten-free diet, I was also on a lot of probiotics because I had just destroyed myself with antibiotics for sinus infections (every other month). When I stopped taking the probiotics, things got worse again. So I did a spit test and sure enough, I still had too much candida. I read an Italian study that linked candida overgrowth with celiac. They talked as if treating candida should be part of the initial celiac healing process. I have not been able to find anything else talking about a connection though, but you might want to see if candida could be part of the problem.

I can't help but think that your problem may be the fact that you already have damage done from eating gluten all these years. If the damage is already done there is no going back. I have heart problems, high blood pressure, seizures, osteoarthritis, eschemia in the brain, severe chronic asthma, etc. I am tired and sleepy a big part of the time. I have severe reactions to a lot of meds. so I can't take meds to help me much. Of course a lot of meds have glutten in them. So maybe the gluten problem has already damaged you to the point that you can't fix it now. Sorry to tell you bad things like this. It is just a guess on my part for you. I know it is most of my problem. Roxy