This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
Thank you for this post, and for the link to the article about gluten sensitivity as a neurological disease. After one year of my pestering him, my father was recently diagnosed with celiac disease. He is now in his 60s and was diagnosed with multiple sclerosis and type 1 diabetes in his 30s. I hope to convince him that despite his perceived lack of GI symptoms, a gluten free diet is waranted becasue it may reverse some of his neuological symptoms. I suffer from peripheral neuropathy, anxiety, depression and forgetfullness, similar to what you describe. I am waiting (impatiently) for these symptoms to improve with my gluten free diet. Your post and article give me renewed hope.
The normal range for B-12 is something like 300-800, however, my hematologist told me that she sees symptoms of B-12 deficiency when serum B-12 is in the 300s. I have peripheral neuropathy (tingling, surging, numbness) in my feet and legs. When I have had gluten, occasionally, my entire body will appear to surge with irritation, like each nerve is inflammed. I also have irritability, anxiety and depression following accidental gluten exposure. Right after celiac diagnosis my B-12 was in the 300s. I received a few B-12 injections. Following each injection, signs of neruopathy stopped, and my mood improved. I think everyone gets mood improvement with large doeses of B-12. My B-12 levels rose to the 700s. After a few months with no injections, the neruopathy returned. It may also have be correlated with stress. At this point, I got intranasal B-12 from my MD, and I take this once weekly (nascobal nasal spray, 500mcg Cyanobalamin). I also added a daily Vit B-12 supplement (1000mcg) on top of my multivitamin (100mcg B-12). The neuropathy has disappeared, at least for now. I have been gluten free for just over 1 year. Keep in mind that while vit B-12 is obviously important for neurological health, so are other nutrients such as folate, Vit E and fatty acids. I am frustrated by docs looking at one nutrient in isolation. I think the best approach is to supplement with Vit B-12, calcium, Vit. D, and take a multivitamin, and to eat as many vegetables, fruits, olive oils and meats (esp. fatty fish) as possible. See this link for some important information about the diagnosis of B-12 deficiency, we should actually look at methylmalonic acid and homocysteine levels instead of B-12. Take heart about the British system, even at the best hospital in the US, they measured B-12 in my case, I had to request methylmalonic acid, and no one has done homocystine. We have to be in charge of our own health.
I am sorry to hear about your neurological problems, I know they are frustrating, and can be scarry. I am also interested in people's experience with neurological problems. I have zinging in my peripery (neruopathy) which seems to improve right after a dose of vitamin B12. I also think I have mild memory loss and confusion. Have you seen the recent study done at Mayo clinic? This is a study with a limited number of people. I want to explore whether folate and vitamin E are also deficient. Of course, I am taking oral supplements, but I do not know whether I am absorbing them. The vitamin B12 that I have is intranasal. The symptoms of peripheral neuropathy do decrease after a dose, so I belive that I have clinical symptoms of B12 deficiency. Any thoughts?
Cognitive impairment and celiac disease
• Hu WT,
• Murray JA,
• Greenaway MC,
• Parisi JE,
• Josephs KA.
Author Affiliations: Departments of Neurology, Internal Medicine, Psychology, and Laboratory Medicine and Pathology, Mayo Clinic College of Medicine, Rochester, Minn.
OBJECTIVE: To characterize the clinical, radiological, and electrophysiological laboratory profiles and histological features of patients who developed cognitive impairment temporally associated with celiac disease. DESIGN: Case series. SETTING: Referral center.Patients Patients with the onset of progressive cognitive decline within 2 years of symptomatic onset or with a severe exacerbation of biopsy-proved adult celiac disease were identified from the Mayo Clinic medical records from January 1, 1970, to December 31, 2005. Patients were excluded if an alternate cause of their cognitive impairment was identified. RESULTS: Thirteen patients (5 women) were identified. The median age at cognitive impairment onset was 64 years (range, 45-79 years), which coincided with symptom onset or exacerbation of diarrhea, steatorrhea, and abdominal cramping in 5 patients. Amnesia, acalculia, confusion, and personality changes were the most common presenting features. The average initial Short Test of Mental Status score was 28 of a total of 38 (range, 18-34), which was in the moderately impaired range. The results of neuropsychological testing suggested a trend of a frontosubcortical pattern of impairment. Ten patients had ataxia, and 4 of them also had peripheral neuropathy. Magnetic resonance imaging of the head showed nonspecific T2 hyperintensities, and electroencephalography showed nonspecific diffuse slowing. Deficiencies in folate, vitamin B(12), vitamin E, or a combination were identified in 4 patients, yet supplementation did not improve their neurological symptoms. Three patients improved or stabilized cognitively with gluten withdrawal. A detailed histological analysis revealed nonspecific gliosis. CONCLUSIONS: A possible association exists between progressive cognitive impairment and celiac disease, given the temporal relationship and the relatively high frequency of ataxia and peripheral neuropathy, more commonly associated with celiac disease. Given the impact for potential treatment of similar cases, recognition of this possible association and additional studies are warranted.
I have the same problem when glutened. I feel like there is a toxin in my body so that cytokines are produced and they are irritating so that I cannot relax. Lately, I have been getting up and drinking warm milk, eating a cookie and reading, then going back to sleep. This helps. Sorry and I too feel your pain! Taylor
I had a similar experience with the Outback near my house. I gave the waitress my gluten-free dining out card and ordered from the celiac menu and made sure to specify that my food be cooked and prepared in clean dishes, etc...I ordered a steak and potatoe with veg. When I got the dinner salad it had orange shredded cheese on it. I had been warned against Annato, the orange coloring sometimes having gluten and to only eat white cheeses. So I sent the salad back. After it returned, I took one bite and felt the sinking reaction in my abdomen. I only ate one or two more bites of the salad and proceeded to feel lousy. I was also on a date, mind you. So I tried to stick it out and finish my meal. That night I felt really angry and upset. I think the main reason was not that I got sick, but that I took all precautions and ate at outback just because of the menu, and I still got sick. I have had more success with small, family owned restaurants where the chef actually knows the ingredients. The only chain that I will go to is Legal Seafood. Sorry for your experience, and I want to caution others that Outback can indeed be a problem.
I am relatively new to the board, but I want to give you my perspective. I applaud you for self-educating and trying to find the truth about your continued GI problems. My recommendation is to try to seek a diagnosis using the medical system, if possible. This can be difficult, the average time to diagnosis is published as 11 years. However, if you can establish a positive relationship with your doctors, they can help you deal with any additional conditions or vitamin deficiencies that may come up in the future (for example, I had anemia, vitamin B-12 deficiency and osteopenia). If you have positive serology with the celiac panel, the standard is to see a gastroenterologist and get an upper endoscopy with biopsy. They will tell you to keep eating gluten until the biopsy, which can be hard. However, this way, if positive, you will know that you have the disease. This will strengthen your resolve when facing the lifelong diet change and related symptoms / conditions. When I went to my hematologist (my first sign was anemia), I wrote on the history form under additional questions "GI disease, chrones, celiac?". But it took well over one year from that point and an additional doctor (and I actually had to convince her to run the pannel) to get someone to look for celiac. However, I recommend persisting, so that you can get the best possible care, we deserve to have our doctors on our side.
The social aspects of the gluten-free diet are a challenge. I can relate to your anxieties, as I am your age and also like to travel. All I can say is, take one day at a time and don't let that overwhelm or stop you. I still travel and enjoy eating out, it is just takes planning and patience. Most of all, don't let anyone make you feel like a hypochondriac. Some people wont get it, but who cares? Our health is our most valuable asset.
Since being diagnosed, I have become more sensitive to wine, especially white wine. This is sad as wine tasting is one of my favorite things to do. I can drink 2 glasses of red over the course of a night with dinner and usually have no problems. However, the other night I had a single glass of chardonay and had an elevated heart rate for the rest of the night, had trouble falling asleep, had a headache and sore shoulders the entire next day, and developed a terrible headache by the next night. Could this be due to sulfites and is it in any way realted to B-12 deficiency?
I live in Baltimore but my family has a smal house there. I go to Kennebunkport about 1x per month except in winter. It is great to get some restaurant recs. as I always want to eat out while there but have had some problems with reactions. - Thank you! The natural foods store in Kennebunk stocks some great gluten-free foods, inc. Kinnikinnick food doughnuts - I love them.
Yes, I have symptoms of depression that are very similar to those you all are describing. Before diagnosis I was anxious, slightly paranoid and neurotic about things like leaving the stove on or my cat getting out. I can best describe it as a lack of a feeling of well being. This was very new to me because I have always been a particularily happy person. I always thought that I must have extra serotonin. Anyway, after diagnosis, I also notice a correlation with gluten exposure. My reactions to gluten used to be more severe than they are now, and I would cry and feel totally lost and do stupid things. One time I went to a restaurant with friends in a city that way 1.5 hours away I - Spaghetti factory. Yes, I should have known better than to eat in the spaghetti factory, but I was with friends and trying not to be a pain. Also, the restaurant handed my a computer print out with all their gluten free foods listed. I had a steak, green beans and a tomato and mozarella salad. Well, on the way home, I spaced out, ran out of gas, had to call AAA and get gas delivered to me on the side of the road, and then at home I misplaced my keys. All of this is extremely unusual for me, as I am typically functional! I am sure that gluten affects your cognitive state, reasoning, and mood. Part of it is frustration that we somehow screwed up, and part is chemical. Inflammatory cytokines make us feel bad, this, I think, is to get us to stay home and heal from infections and not expose others (from an evolutionary standpoint). Then there are neuroactive chemicals like amines, I don't know much about this. So, give yourself a break and realize that the depression is connected to the gluten and you will get better!
I need to take calcium and iron supplements because I have osteopenia and low ferritin. I also take a multivitamin, in hopes of getting the other nutrients I need. However, I have recently read that supplements are a common source of hidden gluten and might be mislabeled. I got my supplements from whole foods and Wegmans, and the wegmans brand specifies that there is no gluten in the product. Can I trust them?
Hello: I am new to this forum but am glad to hear a discussion about peripheral neuropathy. I had this, it was worst right about the time of diagnosis, and persisted for >6 months. My feet would pulse with electricity, almost like a buzzing sensation. Occasionally, I will get this in my face when extremely tired. Dr. Peter Green has a chapter on it in his book, Celiac disease. For me, it is almost completely gone now, but I have the same experience of it returning with gluten exposure. I think it is due to systemic inflammation and perhaps activation of inflammatory cells around the nerves. However I do not know why the cells would be there in the first place. Hopefully, it is not autoimmune attack of a nerve related protein. In any case, it went away for me with the gluten-free diet, which is very, very encouraging.