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
Thanks soooo much for the detailed information. I think my next step will be to consult with a travel clinic and then talk to my doctor. It would be Kenya and Tanzania. You sound like a very experienced traveller!
Hoping someone may already have the answers to this question. I have been invited on a safari to East Africa next year. It is a lifetime dream but I have a few hurdles to jump first. Does anyone know if the CDC recommedned/required vaccines are GLUTEN FREE? I a few other isssues I'll need to address with my doctor like interaction with my other medications and a current medical condition that could be aggrevated by the shots...but I'm taking it one step at a time. THANKS!!!
The following vaccines may be recommended for your travel to East Africa. Discuss your travel plans and personal health with a health-care provider to determine which vaccines you will need.
* Hepatitis A or immune globulin (IG). Transmission of hepatitis A virus can occur through direct person-to-person contact; through exposure to contaminated water, ice, or shellfish harvested in contaminated water; or from fruits, vegetables, or other foods that are eaten uncooked and that were contaminated during harvesting or subsequent handling.
* Hepatitis B, especially if you might be exposed to blood or body fluids (for example, health-care workers), have sexual contact with the local population, or be exposed through medical treatment. Hepatitis B vaccine is now recommended for all infants and for children ages 11–12 years who did not receive the series as infants.
* Malaria: your risk of malaria may be high in all countries in East Africa, including cities. See your health care provider for a prescription antimalarial drug. For details concerning risk and preventive medications, see Malaria Information for Travelers to East Africa.
* Meningococcal (meningitis) if you plan to visit countries in this region that experience epidemics of meningococcal disease during December through June, (see see Map 4-9 on the Meningoccocal Disease page).
* Rabies, pre-exposure vaccination, if you might have extensive unprotected outdoor exposure in rural areas, such as might occur during camping, hiking, or bicycling, or engaging in certain occupational activities.
* Typhoid vaccine. Typhoid fever can be contracted through contaminated drinking water or food, or by eating food or drinking beverages that have been handled by a person who is infected. Large outbreaks are most often related to fecal contamination of water supplies or foods sold by street vendors
* Yellow fever, a viral disease that occurs primarily in sub-Saharan Africa and tropical South America, is transmitted to humans through the bite of infected mosquitoes. The virus is also present in Panama and Trinidad and Tobago. Yellow fever vaccination is recommended for travelers to endemic areas and may be required to cross certain international borders (For country specific requirements, see Yellow Fever Vaccine Requirements and Information on Malaria Risk and Prophylaxis, by Country.). Vaccination should be given 10 days before travel and at 10 year intervals if there is on-going risk.
* As needed, booster doses for tetanus-diphtheria, measles, and a one-time dose of polio vaccine for adults.
I have POTS and was diagnosed by Dr. grubb, the POTS specialist in Ohio. He said there is a definite link between the autoimmune disorders effecting the gut (celiac) and POTS. I got POTS shortly after being diagnsed with gluten intolerance. Feel free to email me if you want to talk more about it.
I was also recently diagnosed with POTS after 2years of having symptoms of dizziness, tachycardia, fatigue orthostatic intolerance and pre-syncope on a daily basis. The dizziness came on at the same time I had a positive biopsy for Gluten Intolerance. The cardiologist I finally saw who is an expect in dysautonmia said it is very common that an autoimmune disorder in the gut will trigger autoimmune damage to nevrous system and thus POTS. I am slowly getting better but the prognosis is 2-5 years for recovery.
My Prometheus Celiac Gene test recently came back negative. One year earlier I had a negative blood test but a questionable biopsy that showed an elevated T cell count but no villi damage so I was put on a gluten-free diet based on the biopsy. I just had my one year follow up biopsy that showed T cells in normal range...basically a healthy small intestine. So here is my frustration:
Based on the negative gene test my Dr was initially saying I could go off the diet since I do not have celiac disease. Now that the biopsy is back he says he is very pleased with the results and attributes the improvement to the gluten-free diet and says to stay on the diet even though the gene test is negative.
My symptoms had mainly been bloating after eating and constipation. I was having some bleeding and acute reflux at the time I sought treatment. The gastro I went to was coincidentally a celiac specialist. After a year of adhering to the gluten free diet I have seen some moderate improvement of GI symptoms but I also have had new symptoms that came on after I went on the gluten-free diet like hair loss, weakness and fatigue associated with orthostatic hypotension (on medication for that).
Basically I am very confused. I feel like this is such a dramatic lifestyle change for something that I feel is not 100% certain. It would be one thing if I felt great...the dr. says give the gluten-free diet more time and maybe the other symptoms may improve. Obviously I am not being "glutened" from a secret source or the biopsy would not be so good. We've run tons of other blood tests for other autoimmune stuff, all normal...
I have suffered from constant dizziness beginning exactly the same time I was dx with gluten intolerance (neg blood /pos. biopsy). All my GI symtoms improved on the gluten-free diet within a few weeks but a feeling of dizziness/disequillibrium would not go away. After 6 mos of having several near fainting episodes I was sent to a cardiologist and given a tilt table test that showed orthostatic hypotension. My blood pressure was not regulating when going from sitting to standing. I have read one article that mentioned OH as a symptom of celiac disease. After 4 mos on medication to raise my BP the dizziness was still present. After ruling out inner ear trouble I had a neck xray that has revealed some arthritis in my neck. Since starting glucosomine condrotine supplements I have seen some improvement.
Mariposa Brownies -- the triple chocolate truffle -- are bar none the ABSOLUTE BEST gluten-free brownie/baked good I have tasted. You could serve them to non-gluten-free people and they's NEVER know the difference.
I am on my second order from Mariposa. They are high quality gourment, as reflected by the price, but soooo worth it!!! I have tried the mixes and some store bought brownies like Crave Bakery in SF and NOTHING is even close to the Mariposa. I think the trick is they do not use a lot of flour so they are super mosit.
I am so happy I have discovered Mariposa Brownies!!!
So sorry to hear about your daughter's situation, 18 months is a LONG time to not feel well. I was extremely interested in your post because the symptoms your daughter has experienced are very similar to my own. In the last eight months I was diagnosed with gluten sensitivity and also began taking florinef after a positive tilt test --- both presented at the same time and while I cannot get a doctor (primary, gastro, cardio or neuro) to connect the dots, my reality is that these symptoms/events are related.
I first saw a gastrointerologist in April 04 for rectal bleeding and was given Metamucil, psyllium, a fiber supplement. By coincidence my gastro is well known in the celiac field and suspected based on my symptoms that I may be gluten intolerant and ran the blood test. The blood test came back negative.
After several weeks on the fiber supplement I experienced greatly increased bowel movements and some weight loss. In June 04 I had the first of about 6 frightening episodes that involved feeling very dizzy/lightheaded, legs weak like jello, heart palpitations, numbness like blood was draining from my hands, just short of passing out. With the onset of these episodes I experienced a weight loss of 20 lbs over about 6 weeks, acute acid reflux and total loss of appetite, I could NOT eat.
My Primary care Dr. was fairly useless and said the near- fainting episodes were likely "anxiety" related and he put me on priolsec for a month for the reflux. The sudden and continued weight loss did get them to take this seriously though. After a few more of the dizzy episodes I was advised to see a cardiologist. The first cardiologist said when the gastrointestinal problems were resolved the episodes would probably subside. He suggested the vagus nerve was possibly being irritated by my gastro problems, a distended stomach or something like that.
I quit the fiber supplement on my own as this was the only change in my diet before becoming so sick, I did not have any dizzy episodes for over a month. My hair was thinning over the entire time. Since you said the doctor mentioned it, is there any reason to suspect an eating disorder or laxative use by your daughter?
In August 04 after little improvement on the prilosec I returned to the gastrointerologist, remember an expert in celiac, who performed a biopsy, it came back positive. Negative blood test/positive biopsy or vice versa is not uncommon he said. The pathology / high T cell activity was, in his opinion, consistent with either reactivity to gluten or cows milk protein. The doctor said it was likely gluten but in light of a negative blood test, he said the only way to tell was to eliminate both for 3 months and reintroduce cows milk later. He had me see a nutritionist to work up a diet/meal plan, I WOULD RECOMMEND THAT! I've since reintroduced dairy without much reaction.
I started a casein free/ gluten free diet in Sept 04. Within 2 weeks I saw noticeable improvement in my gastrointestinal symptoms but continued to lose weight likely due to adjusting to the diet. BUT just as I thought they'd finally figured out what was wrong --- the dizzy/near fainting episodes came back and escalated, to the point I had a major attack in Sept. that was close to a seizure with a clenching jaw, trembling and weakness in the legs. This got me sent to a neurologist, my gastroenterologist suspected autonomic dysfunction.
AFter that major episode in Sept. my symptoms were present daily, I was unable to stand for any extended periods of time without feeling like I would collapse. Could just barely get to work and back, couldn't go to the grocery store because I would get so dizzy after 10 minutes.
The neurologist said it sounded like postural hypotension, a type of syncope. He referred me to a new cardiologist and who did an event monitor and a tilt test that came back positive for postural hypotension. The tachycardia I exhibited during the test sugegsted the hypotension was related to decreased intravascular volume, not enough circulating blood, this can be caused by a number of things including dehydration.
I also had a cortisol test since Postural hypotension can be a sign of Addisons disease, an auto immune disorder of the adrenal glands. TThis was negative. There may likely be an underlying vaso depressor cause with my postural hypotension they indicated.
I have been on florinef for 2 months and have definitely seen some improvement, especially after the dose was increased from .1 to .2 mg, though my potassium is now low on the higher dose.
I am still no where near where I want to be health wise, but I am improving and grateful for that. I continue to seek someone to tie it all together. I will always point to the metamucil/fiber as the trigger. A gluten free diet is NOTHING compared to the symptoms of pre-syncope. Dealing with both is often depressing.
The cardiologist and the neurologist seem pretty convinced it is NOT neurological, the cardiologist says determining the cause of the decreased blood volume is not in a cardiologists domain, they can just treat the symptoms of hypotension. My primary care doctor says ask the specialists and I tell him they say ask him, he says he can't come up with anything, my other blood tests are normal, but it doesn't sound like MS or leukemia or all my other fears. SO I am seeking a new primary care doctor and believe in my gut that there some relationship between all of these symptoms but I don't have the right doctor YET