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
I glutened myself last year with CRUMBS. Teent tiny amounts, totally by accident.
Within 3 hours I had diarrhea that lasted over 6 weeks.
I thought I was going to die, everything made me sick.
I started taking glutamine and within days was totally better. It was astonishing.
I don't know if it was a coincidence, but my Dr was totally stumped and just had me taking immodium so I did not get too dehydrated.
xoxoxo back girl!!!
Yeah, it has been a crappy long journey, eh? (I can say that, I'm canadian).
I expect we will be feeling the effects for a LONG time, but it just reminds me how far I have come.
Every day that I am not in screaming pain, I celebrate. Every day that I don't have suicidal depression, I celebrate.
That's all I can do. I find myself singing in the car (at the top of my lungs and I am BAD) and remember a time when I thought I would never sing in the car again. Stupid little things like that that make we weep with gratefulness, I will literally CRY when I can do something that two years ago I thought was gone forever. Very few people understand this. You start feeling poorly, you start fading away and pulling back. Your friends and family watch helplessly, fearing you are going to die...You start to get better, they are SO happy but don't even realize the magnitude of how you feel and the hell you have gone through.
I would never wish this in anyone but I am not angry anymore that it happened to me. I have learned SO much about who has my back and what I am capable of. What doesn't kill us makes us stronger
2 years gluten-free and everyday I am so thankful that we figured out what was literally killing me.
It has not been easy but there are more good days than bad.
No more anti depressants. No more weight loss. No more insomnia. Nerve pain is slllllowly getting better.
Never give up hope. There were many many dark days, even after diagnosis because it too me SO long to feel human again.
When the GI said yup, it's celiac, stop eating gluten and you should feel better in a few days and I didn't, I thought he made a terrible mistake. It was the from the wonderful people here that I learned it can take a LONG time. I learned to be kind to myself and celebrate the good days and push through the not-so-good ones.
Yikes. I had so many of these:
Mysterious bruising on the body (i.e., legs, arms, stomach)
Sticky, floating pale stools
Joint/bone pain (prevents sleeping at night)- this was HORRENDOUS
Cold hands and feet (intolerance to cold)
Extreme fatigue (14-16 h/day)
Panic attacks/anxiety (diagnosed)
It's hard to say where you may fall in the spectrum. Some Celiacs have negative blood work and positive biopsies, some have positive blood and negative biopsies, some people have neither but heal on a no-gluten diet.
If not eating gluten makes you feel better, then I say go for it, especially if you have no intention of getting the endoscopy done.
You do not get rid of it. Of course your endoscopy came back clear, you stopped eating the stuff that caused the damage. That is the point, When you eat gluten, it causes your body to attack itself and damages your intestines. When you stop, you technically should heal.
I don't blame you at all, but I think the Dr. is a problem.
The celiac never "went away". You just stopped exacerbating it. Stick with the gluten-free diet. That is likely the problem.
Good luck! Maybe look into finding a new doctor? Who knows the basics of celiac disease?
First, huge huge hugs. I can totally relate.
Second, two weeks is a DROP in the bucket of time. These things take a long time to heal.Myself, I was diagnosed by a fluke by a neurologist when I had TERRIBLE pain in my nerves. I thought I was going to end up in a wheelchair. My feet could NOT touch the bed when I slept, the pain was so bad. It took a long time to feel better. I was also VERY depressed and had huge anxiety. All of these neurological manifestations can take a while to heal. I can tell you that the nerve pain is MUCH better and manageable and I am off the antidepressants. I am probably healthier in many ways than I have ever been.
I too have no contact with the Dr's, no followup. The GI dr said "Stop eating gluten and you should feel better in a few days". Well, that was crap. Everyone heals at a different rate.
I bet that the Celiac is making you so, so depressed and anxious. The one piece of advice I have is to be very, very gentle with yourself. Take it one day at a time. Eat whole, unprocessed food that will will limit potential cross contamination. If you haven't done so, give up dairy until your intestines have a chance to heal.
If you don't feel well, don't push yourself. You WILL get there.
I had such depression and anxiety that I was almost suicidal. My Dr have me Cymbalta, that I think helped me amazingly.However, I since learned that gluten can be a neuro toxin, so last December I decided to try tapering off and I am OK. Actually better than OK. It may be worth a try but please please please make sure your Dr knows and even alert loved ones in case there are changes in your personality.
All the best!
I didn't get the impression that she had "trouble". Sounded like she may be on the gluten free bandwagon a little bit. I wasn't entirely sure of her problem with it. I didn't go into the details that I thought I was going to die, as did my family since nobody knew what was wrong for ages. and STILL suffer neuro effects! I just beningly smiled and left the store.
I was at a local health food store buying some organic sausages (on sale) as well as a few other things. I was chatting with the cashier about the crap in the food industry. She then tells me that the WORST food in the world is wheat and that nobody should eat that! I told her (because we had "bonded") nthat it wasn't a problem for me because I have celiac. She exclaims "Ohmigod! You are SO lucky!"
I looked at her questioningly and she explained "well, you can't eat it even if you wanted to!". Ummm. OK.
My husband compared it so saying "I am so jealous that you are anorexic! I wish I could fit into those jeans"
Blood work is rarely wrong. It tends to go the other way, people have negative bloodwork and feel tons better off gluten. A few things to consider. Maybe you caught it early so that the damage is patchy or almost non existant or they didn't take enough samples. Doesn't matter. You are saving her from potential health problems down the line!
Some enlightened doctors are diagnosing on blood work without a scope because of the sensitivity and specificity of the tests available. Again, I am not sure what tests she had done, so can't comment on her results.
There are a group of people called latent or silent celiacs where they have positive blood work, normal endoscopy and no symptoms. They many times go on to develop symptomatic celiac disease. I am a 6 foot tall woman and was diagnosed at 42. I was only sick for a few months but it hit fast and hard. Neuropathy, anxiety, insomnia, depression, weight loss. When I had the endoscopy, my villi were totally flattened. I asked the GI how long have I had this for, to have this much damage and he said all my life! Never a problem and then the poop hit the fan in a big way.
There must have been a reason that you had the test? What did the Dr. say to do? How do they explain the positive tests? What tests were done? Personally, I would do it but that's because I almost died, I was so sick. And none of my symptoms were "classic" celiac, so I feel SO lucky that it came out in some tests that we did to rule tings out!