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
Haven't been to the forum in awhile, but some of you might remember my complete meltdown over my wife's constant contamination. Long story short, she had DH flareups for months, was completely exhausted, depressed, digestive issues, the whole 9. We did everything we could to make sure she wasn't getting contaminated, but this continued for months.
Finally I found a post somewhere on this board about Carageenan. After doing some research we found that it can cause Celiac symptoms in some patients. So we cut it out completely, amazing how many "gluten free" foods had this ingredient.
Happy to report, she hasn't had a flareup or any celiac symptoms since then. So I wanted to first of all say thank you for all the help and support, and second of all bring this to the top of the board in case others weren't aware. I hope it helps someone the way it helped her.
just wanted to let you all know, I read somewhere around here that carageenan could cause celiac-like symptoms. Did some research and this seems to be a widespread problem. LeeAnne had been drinking almond milk to avoid dairy, sure enough it's got carageenan. She stopped drinking the almond milk and hasn't had a new flare in 5 days. She still feels pretty crappy, but hopefully it's a step in the right direction. She went and saw an NP yesterday, who wrote a prescription that she should work from home over the next 4 weeks. Her boss was very understanding. I'm hoping we're turning a corner here. We made an agreement that even if she has a huge turnaround over the next couple of weeks, she's still going to the mayo clinic, she's still shopping for doctors, she's still seeing a nutritionist. She was prescribed a low grade antidepressant that could give her some temporary relief.
Sorry to hear you're still having trouble MO. My wife is still having lots of problems as well. Today she saw a nurse practitioner that she really likes, and got a written perscription to work from home for the next four weeks. We're hoping this is the start of something good, attempts to work while healing have not been going well.
I have the same fear. Ever since she got diagnosed I've played nurse and pleaded with her to pay attention to her own health and well being. She's a workaholic and always puts more on her plate than she can handle. I'm hoping now she's really starting to get serious. She's not pushing herself too hard and is giving herself ample time to rest when she needs it. We are definitely looking for a band-aid just because she's desperate, but won't stop till we get some kind of handle on this.
Thanks for the link, glad to find someone on here who can also look at it from a thyroid and DH perspective.
She's seeing the psychiatrist to see if she can get some temporary help. She never had this problem(the fatigue) when she was on adderall. She's looking for something to help her stay up and keep her job while she tries to figure this out. I know that doesn't sound healthy, but she needs her job not just for money but because she loves it and gets a lot of her self worth from that. I wish it was as easy as just finding somebody who knows, but it generally takes a doctors visit and a couple hundred bucks for her to figure out if this person is worth seeing.
Thanks everybody, that's a lot to think about. I always get some great ideas here and use them to follow up with my own research. A lot to learn for sure.
I am definitely concerned about the thyroid issue. I understand that hypothyroid can be a serious life changer even without Celiac. There's a lot that we don't know about the disorder. She's only seen an endocrinologist once in the last year or so, and that Dr. was of very little help. She does go in to her pcp every 3 months to get blood drawn and her levels checked. They always seem to be fine, but I wouldn't doubt if this problem is connected to that.
As far as cross contamination, we really don't know what else to cut. She has cut dairy, looked into a problem with carageenan yesterday and now that's out so no almond milk. She's eating fruits, vegetables, chicken, rice and fish. We've called every company of every product she's used. Food, cosmetics, cleaning products, hygene products. Switched the dog food to gluten free even though I'm the one who generally feeds the dog. In the past we've been able to figure things out with a food journal and some research. I can't think of anything else we could do right now. It's really difficult because she's probably malnourished because she's not properly replacing what's been cut out of her diet.
She went to see a GI doctor yesterday who, we were told, had a lot of experience dealing with Celiac disease. As she told him her problems, he looked at her like she was speaking a foreign language. Not really much help at all. Two doctors in two weeks, neither any help.
Our next plan is to stick to a 1 ingredient diet for the next few weeks. Nothing with more than one. She's cut out all vitamins and supplements. She takes the thyroid meds and clonazepam for seizures(she also has neurocardiogenic syncopy, or fainting spells). We're looking for a nutritionist who knows this disease and can give REAL information. I know, good luck with that. It seems like priority number 1 is if she's getting glutened or getting gluten-like reactions, we have to make it stop so that she can heal. The way I understand it is the longer it takes the more sensitive she as the intestinal wall grows weaker. My completely uneducated theory is that she went for a month being contaminated by her medication, which really weakened her. Now she's getting contaminated or having similiar symptoms because she's not really better after that month of abuse. We have an appointment with the mayo clinic in March. We're hoping by then we may at least stop or at least slow this continuing cycle. After reading what you wrote I think we probably need to put another endocrinologist at the top of that list too. She's trying to schedule an appointment with a psychiatrist to see if there's ways that he can help with her fatigue and brain fog(which the GI doc recommended)
Thank you all for reading and taking the time to give input. You've become invaluable to us as a resource to help her get healthy. I hope that we can figure this out and I can give back what we've learned and help someone else.
Lisa, she tried the elimination diet in the past. Did determine that she had problems with things like nightshades, but eliminated them from her diet. Problem is right now, there's not much else to eliminate, she's eating so little
Shadow, what is leaky gut? I've heard that phrase tossed around a bit and don't really think I've ever understood it
She has an appointment with a new GI doc on monday who says he treats lots of celiacs. Also has an appointment at the mayo clinic in March. I wonder in the meantime if I shouldn't be taking her to a hospital to get her some fluids or vitamins.
Hi all. I've been posting in the regular forum but thought I should start posting here since I don't suffer from this disease the way most people on the forum do. But man, this is starting to get hard.
My wife was diagnosed Celiac a little over 3 years ago. We've constantly read and researched as much as we can about the disease. In November of last year she started getting DH inflammations. Generally, when she gets contaminated, she has a few days of digestive problems followed by DH. Generally, her DH clears up about 7-10 days after the initial contamination. I know this sounds minor to the horror stories I've been reading on here but it is what it is. So back to my story. There are times that the DH contamination is not accompanied by any digestive issues, but it is a red flag that she got something in her system. Anyway, come to find out that Synthroid, the thyroid drug she's been taking all of her life, is no longer gluten free. So she switches meds, DH clears up, she feels better in a week. She goes on vacation, and when she gets back, she gets another flareup.
The flareups have been coming on and off ever since late December. It starts to get cleared up, then she gets it again. We've taken out dairy, soy, any processed foods. She's basically eating fruit, veggies, rice, and eggs, taking vitamins and her medication and yet as of this morning she has had 3 straight days of digestive problems followed by increased DH. There's no gluten in the house. I've even given up beer(mmmmmmm beeeeeeer) which was the last gluten holdout we had in the house. But I don't want to take any chances. We've washed bedsheets, done a deep cleaning, called companies, can't think of anything else we can do. I don't kiss her unless I've thoroughly sterilized my mouth.
This constant contamination(if that's really what it is) leaves her sick with no energy. She struggles to keep her eyes open. When she can do it, she can't concentrate. She's missed a few weeks of work through this time period. She had been prescribed adderall to help her function, she doesn't take that anymore either due to contamination fears. She's horribly depressed and has told me she's had suicidal thoughts. She emailed this to the mayo clinic a few days ago and they called her to check and make sure she was ok.
I know many of you get contaminated and the effects last weeks or even months. She's lucky in that that doesn't happen to her, but she keeps going through these cycles of getting better/ getting worse.
Its getting harder just for me to keep it together, much less her. I started taking antidepressants about 2 months ago, and it's helped me a lot. But everytime she gets a new contamination, I feel so defeated. I'm like her nurse at this point, I'm the one who constantly remind her that her health is the most important thing, no matter the cost. But I really can't even think of any possible way she could be getting contaminated. So I'm as depressed as I've been since starting the medication. I started taking it because I'd break down in tears at work and have to leave early. That's where I am today.
It just feels like after doing the diet for years and learning more and more about the disease, she's in the same place that she was before she got diagnosed. At that point, she was literally a few feet from suicide.
I'm scared and very alone right now. Friends really don't understand what this is like. My parents keep getting on my case because they think there must be a doctor or medication somewhere who can solve these problems. They don't get that it doesn't work that way
I'm open to any thoughts or suggestions you may have
Hi all. My wife has been getting constantly contaminated for about 2 months. She gets over one glutening, and another sneaks up. We really don't know what's causing it. So she's going to go on a raw food diet for awhile. My concern is that she needs protein, so she needs to eat a lot of nuts and seeds. We've really had a problem finding anything in that area that's gluten free. Any recommendations? I mean 100%, 0 ppm, no gluten at all. She is SUPER sensitive. Or if you have any recs for other ways to get protein besides meat and eggs, I'd appreciate that as well.
Unfortunately, there's no timetable for how long you suffer those symptoms. Celiacs react very differently from case to case. From what I understand it's not unusual for you to become more sensitive to gluten as your body heals from years of harm.
Just so I'm not a complete downer, your body IS healing. It WILL get better. It won't be easy, but you'll get there.
you know you could be right. She's never had a problem with Soy in the past, but as I learn about Soy and how it's manufactured(a lot of it from this board) we've tried to make it something to stay away from. Thanks for the tip!
Fyi, my wife was contaminated last night after eating Progresso cream of mushroom soup. It's labled gluten free, but there are progresso's that are NOT gluten free so they may be processed in the same place. Mind you, she's super sensitive. Just wanted to get the warning out there
the thing that got my wife to really figure out her disease was that she was suicidal. I told her this wasn't her, she wasnt crazy, there was something physically going on with her. Turns out when you don't absorb nutrients from food you can get kinda bummed out! Go figure