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 have a bottle of E&J VSOP Superior reserve brandy that I was going to use in a recipe. I called the company and asked if it was gluten free, if they used any caramel colors or flours on their barrels. They confirmed that it was gluten free. But then I did a search on Celiac.com and found a list of alcohols that said "AVOID VSOP!" Sooo, who do I believe? What to do?
You don't sound melodramatic at all! I was terrified, too. It's ok to be scared. You don't know what's going on with your body yet. I second the food journal rec. I kept one for 9 months and it was invaluable. Focus on simple WHOLE foods. These are the most nutrient dense and that's what your body needs to heal.
And the people who don't believe you...well, they aren't living in your body. You do not owe them an explanation at all and don't let their doubt drown out your gut instincts. Many people are scared by the idea of dramatic dietary changes in addition to being ignorant of this issue. Once you start getting better, some of them will come around. (Some will never, but that is not your problem!) All of my tests were negative, but I KNEW that I had DH. I had doctors tell me that there was no way I had DH (their reasons were not sound, but I will not go into that here) I finally found a doctor that supported me and believed me. Don't be afraid to keep looking for a doctor if the first one or two don't seem like a fit.
Stay strong! And sleep as much as you need. Your body needs it.
Hello and welcome!
Good for you for playing your own detective when it comes to your health! That will serve you well. Stay curious and be willing to try new things that might make you feel better. Unfortunately doctors don't always know best, especially when it comes to the spectrum of gluten intolerance. (That does nto mean you should not see one, just try to find one that is supportive of your findings about your body.)
It's really hard to say how long your symptoms will take to subside. We are all so different! But if you eat nutrient-dense whole foods, rest as needed and stay hydrated, then you will be giving your body what it needs to heal. The improvement you have already seen is a good sign! For now I would say the best thing is to focus on improving your digestion/healing your gut, to make sure you are accessing the nutrition in the foods you eat. And, like Cooties says above, stay gluten-free for at least 2 months before you even think about re-introducing gluten. But know that if you should want an official dx you will need to do a gluten challenge.
Pale or clay colored stools can be a sign of biliary insufficiency (you are not producing/releasing enough bile and therefore not digesting fats properly, as nvsmom said above). Are you now or have you been following a low fat diet? That can cause the bile to become thick and viscous from lack of use, when it is supposed to be thin and watery. You could try taking bile salts, or try a raw beet slaw as a condiment daily, especially with meals that have some fat. Grate a raw beet, a raw carrot and a green apple, toss with lemon juice and olive oil. (Beet is a great bile thinner)
As far as the heartburn, this is often a sign of insufficient stomach acid (contrary to popular belief that it is from too much HCl). You might try taking a little apple cider vinegar in warm water before meals. This will help get your gastric juices flowing and that sets the stage for proper digestion and optimal nutrient absorption. Some people use digestive enzymes, too. Make sure you chew your food very well and eat when you are relaxed, not stressed.
Hi errbody! LTNS...Life is really busy these days! I hope you are all well.
Mashed garlicky cauliflower
Sukuma Wiki (Kenyan Braised Collard Greens and Ground Beef) recipe here if you're interested: http://thedomesticman.com/2013/07/02/sukuma-wiki-kenyan-braised-collard-greens-and-ground-beef/#more-4993
I've been drinking ACV in a little water before each meal and I gotta say, it really helps digestion. Anybody try it?
Now that I think about it, my WORST flare happened after I went strictly gluten free. The last day I ate gluten was May 31, 2013. On about June 8th the rash spread for the first time to my tummy, and all the other areas were redder and angrier than ever before. Pure hell! About a month after that was when I got a new little spot on my inner thigh. Was it cc from my newly-gluten-free kitchen? Or was it just the time it took for the antibodies to make their presence known? I'll never know. This rash is the most mysterious, fascinating and infuriating thing I have ever encountered. A year does seem like a long time if you have been very strictly gluten-free. But if there is ANY bit of contamination, that may be all it takes for the rash to appear. (But sadly, is likely not enough to get you a positive on a blood test)
So, two things: You know gluten is bad for you. If you need to a dx then you will have to do a gluten challenge. Only you can decide if you are up for that. And, you need a new doctor, one who will be supportive of you and what you know to be true about your own body, dx or no.
I also have IBS and anxiety and DH. The IBS cleared up almost immediately after going gluten-free. Someone on here once told me "IBS is NOT a diagnosis, it's a symptom". Basically, when a doc says you have IBS, they are just telling you what you already know! The anxiety still waxes and wanes, but is much better. And the $%&#ing rash is still with me, but MUCH, MUCH better.
To answer your questions:
1 - Yes, the test most definitely could have been inaccurate. If you want to get tested again, you will have to eat something gluten every day for a few months, and even then you may get a negative. How important is a dx to you? You can read more about the "gluten challenge" here: http://www.cureceliacdisease.org/archives/faq/how-much-gluten-should-be-consumed-prior-to-being-screened-for-celiac-disease
2 - Is your household gluten free? How strict have you been with being gluten free? I am not questioning your intentions, mind you, but just trying to get an idea of the potential for getting cross-contaminated and possibly making mistakes. My DH showed up after I cut way back on gluten. This was 4.5 years ago when I started seeing my boyfriend. He was/is gluten intolerant so I just ate what he could eat, and cooked what he could eat, which meant most of my meals were gluten free. I would still eat gluten containing items infrequently, when I went out or something, and I was never too concerned about cross contamination (because I did not know I had a problem!) Does this sound at all like your situation?
3 - See #1
4 -Go through all of your toiletries and such with a fine tooth comb and eliminate anything suspicious. Some people say that you cannot absorb gluten through your skin, but why risk it? Also, there is anecdotal evidence here that people are sensitive to lotions with gluten in them. It's just not worth it!
I'm sorry you are having such a hard time, but I know exactly what you are going through. The doctors and derms I dealt with were all equally clueless. I actually had the last derm I saw say "Welp, I'm sorry but there is nothing more I can do for you." Okay, then!
- Ditch the cortisone creams. They may help in the short term but make the rash even worse when you stop.
- Your diet could stand a few tweaks: add more leafy greens (daily), raw and cooked; sip bone broth, either chicken or beef, for minerals and collagen (also daily); replace the Pepsi (too much sugar and bad for you chemicals!) with high quality mineral water; If you have access to high quality, pastured, grass fed meats add those in for variety and to access other nutrients.
- Sweet potatoes are fine as far as sals go, I believe. What made you think to go low sal? It may not be necessary, and it would be a shame for you to cut out even more foods when your body needs nutrients to heal. I know some people felt that it worked for them, but I found it did diddly (I believe squirmy came to the same conclusion)
A good tutorial to get you started in broth making: http://wellnessmama.com/5888/how-to-make-bone-broth-tutorial/ Since you eat chicken regularly, you can use the whole bird!
You are in the worst of it and for that I am so sorry. You will get through this. It's hard, I know...the hardest thing I have ever gone through. Try to be patient. It can take a while to see improvement and I know that can be disheartening. It's a two steps forward, one step back kind of process. Take extra good care of yourself: sleep whenever you can, find ways to relax (meditation and hot epsom baths worked for me), just know that some days will be better than others. But with time the good days should become more frequent. I am 9 months gluten free and things are dramatically improved: the rash is not gone but it is so much less itchy and the flares clear up faster. You will get there.
Hey there w8in!
I just wanted to out in my 2 cents:
Back in November and December I was having a really hard time dealing with stress - not just big STRESS but little everyday things were freaking me out. I was just so frazzled and felt ready to burst in to tears or throw S#&% at the drop of a hat. So, I enacted some really careful stress reduction protocols for myself:
- 2 hours before bedtime, turn lights in the house low and turn off computer. Read something relaxing, drink tea. Minimize stimulation.
- Take a hot bath with epsom salts right before hopping into bed. Epsom is magnesium with is very relaxing for the body.
- Get into bed earlier and at the same time every night. I started getting into bed at 9:30 every night.
- Walk outside every morning, rain or shine. Even just around the block.
- I also took some supplements prescribed by my Naturopath - L-theanine, magnesium and ashwaganda
- Avoid tv and the news like the plague
- No sugar or caffeine (even chocolate had to go, as it really wired me up!)
And it worked! About 3 weeks of this routine and I was starting to feel better. I still follow most of these practices today because they really work for me. You may have to figure out what would work for you, but I recommend checking in with yourself to see what might be causing stress/overstimulation.
And I just wanted to check in/report/send you all love and hugs.
I am doing really well. Like, REALLY well. I keep saying to my family that I feel like a new person - calmer, more focused, waaaay less anxious than ever before in my life. I stopped the Xanax back in December and have been enjoying this new calm in the center of my being. It's wild. I hope it stays! And my digestion is impeccable - too bad it's not something you can really share with people...well, outside of these forums anyway.
The rash still comes and goes but it is so much less of a problem: less itchy, flares clear up quickly, no big blisters, smaller hives in general. I am hopeful that the purple-brown spots will fade in time, but honestly, I can live with it. Looking like a leopard-human hybrid is a small price to pay for feeling as good as I do.
And finally, I want to apologize for not being around very much. When I first started coming here I was so thankful for the kind and loving support that I said to myself "You need to make sure you pay it forward when you are better and help others here." But, you see, one of the wonderful things that came out of this horrible, scary, chaotic last year was that I decided to go back to school for Nutritional Therapy Training and that is keeping me VERY busy. So, I am sorry to not be around, but know that I am thinking of you all.
To the newbies struggling with DH: IT DOES GET BETTER! Take heart, you will get through this. Love your body, it's an amazing vessel. Feed yourself simple whole foods so it can heal optimally. (If you'd like to read a good and not-too-lengthy book on optimal nutrition, check out Eat Naked by Margaret Floyd) Sleep, slow down, drink water. Time and patience are your best allies.