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
My insurance changed so I now have a new GI. He is very knowledgable in Celiac disease. When we tried to get my records from Kaiser transfered over, they said they didn't have any record of my testing (seriously?) anyway since I've been gluten free for almost 7 months he decided to do gene testing on me for his own records.
I came up postitive for DQ2 and he also did my 6 month celiac blood panel which as expected my levels are good. I will have a follow up endoscopy next month to check on healing.
Soooo he strongly encouraged me to get my children gene tested since both of their celiac blood panels were negative, he says they are not going to show up positive because our household is gluten free. The only gluten they get is lunch and if we go out and they get hamburgers. I don't want to wait and see if they develop Celiac, I would never want to see them go through all the illness I've had to endure!
What is the Celiac communities thoughts about if children show up positive on gene testing? Do you take them off gluten or wait and see if they develop it?
Are the rashes like bright pink/red like someone just took a hunk of your skin and pinched it? That's what I get on my legs and stomach and it's due to blood pooling in my extremities instead of reaching my heart, lungs, and brain.
Can you do a little test? Take your heart rate lying down, 2 min after sitting upright, then 5 min while standing still.
If you have an iPhone there is a free app called heart rate which will allow you to do this very easily.
I have just been diagnosed with dystautonomia subtype POTS and I have many of your symptoms. Often I will freak out because I think a spider is crawling across my feet, my hands and fingertips tingle, I'm dizzy and almost faint while standing, and a host of other problems.
If your heart rate doesn't increase over 30bmp while standing or get to 120 or higher you don't have this but it rule out a piece of the puzzle for you. Mine will often be over 130 while standing within the first 5 min.
My electrophysiologist mentioned it. He said it would be ideal but not available here. I'm currently taking fludrocortisone to increase my blood volume and he's hoping in turn that will help with the IST I have a follow up in April
My Dr told me to start exercising, the article is correct recumbent exercising is best. It's not a cure but it is in my treatment plan.
Meds, exercising, salt intake, compression stockings, no gluten no dairy, small frequent meals because POTS effects digestion, no standing for long periods, keep asthma under control because the albuteral will trigger symptoms, no hot baths or showers (I love my hot baths), avoid standing for long periods, keep hydrated at all times. It all seems overwhelming and so much to remember on a daily basis but I need to avoid symptoms because it is life altering. The other day I was on the couch all day because I was so dizzy and sick. No can do! Life needs to be lived! Just one episode of hypotension and blood not getting to my heart and brain leaves me exhausted for 2 days
You guys have all been so great! Colleen, I will be getting compression stockings as that is one of the things recommended to me.
I agree that the unknown is far worse. I know what I'm dealing with, and for the most part have a treatment plan. Treatment is trial and error and doc says it may be a long process but we will work at getting symptoms under control.
Most of you know I've been dealing with cardiac symptoms and a host of other problems. I haven't posted in a while but I was finally referred to a special cardiologist called an electrophysiologist. He diagnosed me with dystaunomia: subtype POTS and possibly inappropriate sinus tachycardia. Just thought I would update those who were helping me process my symptoms. Most days are spent exhausted and unable to do my normal activities. My heart rate can get up to 143 just standing doing my makeup. It's literally exhausting because it's like I'm constantly working out and doing cardio! My blood pressure drops and I have on several occasions almost fainted. Dystautonomia is a dysfunction of the autonomic nervous system. The 2 ER visits I had were complications of this. Blood pools in my legs therefore I developed blood clots in my legs, and the kidney stone and infection was because the autonomic nervous system regulates the kidneys and bladder.
Sooooo not sure if celiac is a player here or not, perhaps this condition triggered my celiac....who knows. One thing research has shown is those with dystautonomia have either celiac or NCGS as well as milk protein intolerance
There is no cure and some days will be better than others. I have to take a medication that increases my blood volume and eat a high sodium/salt diet to keep my blood pressure stabilized. My GP has referred me to Standford here in CA, they have an entire team of cardiologist and neurologist who specialize in this condition as well as an entire testing facility.
That is interesting. I do get dry mouth but always thought it was dehydration. Not sure if I mentioned yet but my blood eosphonils are 11% which is high, they shouldn't be over 5%. I asked my dr about it and he said its due to allergies and asthma but at my worst asthma months they were only at 7%. Everything I read says 7% is normal with asthma and allergies but anything over is considered eosphonilla
I think something is going on with my immune system but getting Drs to listen is like pulling teeth!
In the last 2 months I've had kidney stones with infection, thrombophelbitis, increased blood eosphonils, tingling hands, and dizziness. When will they put it all together!
well that is good news! I don't think they will keep me on meds for long, especially since these meds lower BP and mine is usually low or normal. It does tend to get high sometimes
I seem to tolerate whole dairy just fine. I had issues at diagnosis and switched to lactose free but since I feed my kids whole dairy (they are both very thin too) I didn't want the extra expense so I gave it a try and now tolerate it. I get the gurgles more with the low fat dairy, especially frozen yogurt
I just started the smoothies and only had 2 so far with oats. The tingling started a month ago and it did come around the time of the thromobophelbitis. Before all this I would get bruising showing up for no reason then it went away for months and then out of the blue came the thrombophelbitits. Can't seem to figure it all out!
I had B12 checked at diagnosis and it wasn't low according to Kaiser lab, I have new insurance now so maybe I can ask to get them checked again.