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
Honestly, I don't know how I can really add much to this amazing topic. I am self diagnosed. I have no insurance. Doctors are expensive. Experienced doctors are hard to find. Specialists are even more expensive. When you have skin issues related to gluten, you go to a dermatologist. When you're having GI symptoms, you go to a GI specialist. When you're having reactions to other foods, you go to an Allergist. Problems with joint pain, Rheumatologist.
All those doctors add up faster than I can even begin to tell you. As do their costs.
Weigh that with just giving a Gluten free diet a chance... try the diet, get better... no expensive tests, doctors or specialists doing invasive procedures... I'm sold!!!
My take on WHY gluten intolerances and Celiac Disease is so prominent in our society today....
We started eating more grains *particularly wheat*, processed foods than ever before. And found cheap, efficient ways to package, store and make additives out of it. It's now in everything!
Next, scientists, in an effort to make our food better, started genetically modifying the grains *especially wheat, corn and soy **technically soy is a legume, but that's beside the point*.
Wheat is modified so that the grain is bigger, stronger and has more protein. That protein is mostly gluten. So, we're not just eating more gluten grains, but gluten grains with more gluten in them.
So, if you're genetically predisposed toward having issues with gluten and you eat more of it. *FDA recommends grains to be somewhere around 60% of your daily caloric intake* And the grain itself has more gluten than EVER in human history due to genetic modification...
Well you can see where that can lead to issues. Yes?
First I have to say that I am not diagnosed by a doctor. They did skin biopsy and found nothing. But they did it wrong. I have no insurance and cannot afford to continuously go to doctors that can't do anything for me.... *you can view pics of some lesions I've had and my home iodine patch test in a previous post of mine*
That being said. I find that my skin breaks out more rapidly if I'm exposed to gluten through baking. It could be a coincidence.. but it usually happens if I walk into someone's house and they've been baking gluten foods.
I get a horrible rash on my sides, it starts right above the hip bone and can reach my chest at it's worst. It feels like a chemical burn, itches like mad and I can't wear anything that isn't very loose fitting.
Nothing seems to help it. My current rash has been there, getting better and worse again for a number of months.
What I find kind of helps... epsome salt baths. I have a filtered shower head and use the shower to fill the tub and soak for at least fifteen minutes. But, I have to do this often to get relief. It does help to keep the rash in smaller areas rather than spreading over my entire abdominal area.
I use a good bit of epsome salt and baking soda in hot *not too hot* water.
I've tried lotions, prescriptions, antibiotics and so on... not much of anything helps. Even the salts do not make the rash go away. But you may find relief.
I've read something before about parasite therapy for people with immune disorders. The science behind it is pretty solid. We live in an antibacterial world... and our immune systems are not challenged because of it. Our bodies are wired to combat all forms of invaders that it DOES have to fight. Take that away and you get more confused immune systems.
Is your immune system bored, perhaps???
I quit using anti bacterial soaps after reading that. *I'll give damn near anything a try* Even with that... Not sure that I'd be up for swallowing parasites. At least not intentionally.
I am so happy for you! It is wonderful to know that there are doctors out there that are willing to investigate a person's issues! I've been thinking about this a great deal lately... trying to find a doc to go to that will look into any possible answer for my issues. I'm glad you found a team of them! Congrats.
I really hope they can get you where you should be and soon!
First off: If you're having suicidal thoughts, you need to talk to someone around you. Find some support. I know that sometimes when you're in that mind frame, you feel no one will understand or be supportive, but it's better than sitting around and listening to those types of thoughts going on and on.
Sometimes writing in a journal helps me sort it out. Because if I'm forced to look at that type of thought, I get annoyed with myself for thinking it. It usually helps me refocus my thoughts and emotions.
I remember when I first went wheat free. Before I realized I had a gluten issue too. I ate cookies that were whole wheat. It was right about christmas time. I spent three days laying on the couch crying for no apparent reason. It really sucked. But I was able to equate it to the wheat.
I would have been diagnosed bi polar as well before I started eliminating certain foods.
I think it helps to know it's the gluten effect and not who I or you really are. It will pass! Find something that helps to calm you through this.
I had the same thought that RollingAlong had. Most cheese sauces can contain some kind of wheat or wheat derivative.
Before eating gluten again for three weeks last month, I could eat yogurt without issue. Now when I eat yogurt, I get immediate headache, dizziness and brain fog that lasts for a number of hours.
So, I'd say you can react in many different ways.
Usually when I eat rice now, it's gluten like, stomach gurgling, bloating, severe D... but without all the extra pain.
He totally dismissed the iodine patch test. They did biopsy a lesion that did not show IgA. They had no answer directly for it. Just that it would have shown up on the pathology report if they had found it.
I currently have a new blister on the patch test area. It's been breaking out ever since I did my little experiment!
But I figure that I would have to go in with print offs of information on HOW to correctly biopsy for DH and probably fight to get it done that way.
I'm really not in the mood for it. I will however, be mentioning it to the allergist when I go on Tuesday.
My peanut and now dairy reaction is getting more noticeable. So, it will probably be a good thing to have those diagnosed. Especially because the peanut allergy has a tendency to get pretty bad for most people.
I feel for you having so many positives!
I'm pretty much prepared to be tested for anything that fits my symptoms.
Though I don't see me going back on gluten to prove celiac. If they don't see it, they don't see it. I'm much worse now than what I was and I'm really not about to chance more.
I just hope the allergist understands that.
There are several posts about iodine patch tests. If you use the search box you can see all the threads that have mention of it. You may have to go from the form that they show to standard form when you click on the links. It's in the right hand side of the thread, a drop box. Hit switch to standard.
I posted the picks of my iodine patch test. I also did one on my husband... it did NOT react. He left his on a bit longer than I did. And it stained the skin, but no blister.
Mine blistered like mad! I posted a pick of that as well.
The dermatologist that I went to called it a chemical burn. Then they did a biopsy ON a lesion that I had a week later rather than beside it. The test didn't tell me anything.
I've considered going back because my skin is still rashing out. But, given that I'd have to raise hell and bring in information for them to know HOW to do the test for the DH....
not worth it.
That's just my opinion. I'm not sure what I'd do if it were my kid. I would say to use the SMALLEST band aid that you can find! If he has it, it's going to burn and sting and itch like hell! Then it will blister and scar. So, make it as easy on him as you can.
I hope you find a good dermatologist!
I see that you are IgA deficient. What tests did they do to confirm that?
I was posting under one of my original posts as to keep everything together... but I figured, I should ask some questions.
I was wheat free for four years, gluten free for 16 months. *felt better lots of issues cleared up except for the D*
Started eating gluten, did so for three weeks to get tested. Got my tests.
Doctor doesn't know much about celiac disease so she went with me on this.
I handed her the list of tests to do, but she did not do a total IgA level.
My results were
IgA < 1.2 Range 0.0-10.0
IgG < 1.2 Range 0.0-10.0
So, I asked her about the possibility of IgA deficiency. She agreed that it was possible. My LYMPH numbers were also quite low and the EOs were quite high. Very high, actually. Vitamin levels were normal. *I take a multi and D and fish oils*
I've been back on the gluten-free diet for 4 weeks tomorrow.
I'm still nauseous. I actually had to excuse myself from the exam room to vomit. That's a first. I'm used to the nausea, but it's the first time I've gotten that sick. No clue when that will clear up.
I'm no longer tolerating rice, yogurt or apples. Things I was able to eat prior to my little gluten test. Now, my system is going CRAZY on me!!! Worse than what I was before.
My questions... I know I can't have antihistamines. But should I be eating some of the foods that I know make me sick. Though peanuts I worry about because my reaction to them is kinda harsh. Severe dizziness and headache. Which is the same reaction I'm now having to milk proteins.
I'm not sure it's such a grand idea to eat them before the appointment....
Which is another thing that surprised me. I didn't expect to be able to get into the allergists office for at least a month. It's next Tuesday!
So, I've no clue how to prepare.
Suggestions??? I know she wants my IgA levels and possibly allergy tests... she mentioned skin tests. I have NO clue.
IgA <1.2 Range : 0.0-10.0
IgG <1.2 Range : 0.0-10.0
She didn't run the total IgA
My LYMPH are low
MCH high *not sure what the hay this one is supposed to be for*
If I'm not mistaken, IgA and IgG ARE lymphocytes the LMPH that are low.
I'm guessing this would indicate and IgA deficiency.
I have an appointment in the morning. I'll see if she'll look into it a bit further.
The patch test is what made me get the appointment for the dermatologist.
Unfortunately, he called it a chemical burn. oi... just oi....
It's all good. I have a few articles printed off just in case I do get an opportunity to try try again. Not sure if I'd do it. But it's nice to know they're there.
Thank you very much for yet another link.
I've been all over the web trying to deepen my understanding of all of this.
I appreciate all the links and extra information you and others have given me access too.
I think it takes time for all of this to settle in to the brain for me.
I'm pretty glad that I won't be going on gluten again too!