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About Crimson

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  1. 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?

  2. 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.

    Feel better!

  3. 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??? :P

    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.

  4. 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!

  5. 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.

    Feel better!

  6. 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.

  7. Crimson, I'm wondering as well what tests they do to confirm IgA deciency. I have read some of your other posts and I saw your pics of your patch tests and your DH blisters. Did a doc biopsy your blister or did they dismiss it?

    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.

    lizard00, I hope you kid is doing ok!

  8. 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.

  9. 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!

    Good luck!

    I see that you are IgA deficient. What tests did they do to confirm that?

  10. 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.

    Much thanks!


  11. Ok, Blood tests: Finally got a copy... sheesh

    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

    WBC high

    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.

  12. 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!


  13. Thank you for that link! I appreciate it. The biopsy that they did was ON the lesion and not beside it. I don't know of any other dermatologists in the area though.

    This one is a 45 min drive.

    Anyway, iodine patch test done and the pics are in my other post. You can see them and the patch test that I did on my husband as well. Same amount of time, TOTALLY different outcome.

  14. You obviously have quite an issue with gluten. Given that your reaction is so immediate, it's probably something that would show up on an allergy test. Maybe a good allergist. If you're going for some kind of diagnosis.

    I'm coming to the conclusion that gluten intolerance is the same no matter what the diagnostic is.

    As for the dietary concerns that you have...

    Protein www.trueprotein.com has non GMO rice and pea protein that works quite well for me. Make supplemental shakes, add it to foods, use it in place of some flours for baking too. I get the plain with no sweetener. It's much more useful that way.

    Protein is so important for vegetarians.

    Beans and rice together help to make a whole protein as well.

    You may want to consider adding higher calorie foods such as coconut oil and flour, almond flour * you can make your own with blanched almonds and a coffee grinder* to help you put on a bit of weight. I eat a fairly high fat *healthy fats such as coconut oil, walnut oil, some olive and almond oils, also plenty of whole almonds, almond butter, flour and so on*

    Basically, if you chose to be vegetarian, you need to educate yourself a bit on dietary needs and how to supplement them.

    I know there are websites that can give you far more information than I can.

    Feel better!

  15. Ok. So, here's the update...

    Frustrating. haha

    Biopsy was inconclusive. I suppose I will wait and see if I get anything that can't be misconstrued as anything but DH. I certainly had that with the original blisters. But, they were already opened by the time I got to the derm. So, I paid out a ton of money for them to tell me that I have dermatitis.

    I'm a bit frustrated with them.

    My vitamin levels and blood work all came back normal.

    I was eating gluten for three weeks. Obviously not enough.

    Can't. do. it. again.

    I simply do not have it in me to eat gluten again.

    I'm still working it out of my system. Massive headaches and joint pain.

    My skin is going nuts with acne. And I'm all over the place emotionally. Mood swings a bits of depression. *I think I hate that the most* My energy levels are also all over the place. One minute I'm hyper, the next I'm ready for a nap.

    I'm still waiting for my stomach to calm down. Pepto bismol gives me heartburn. o_O

    I'm still not sure WHY I did this all to myself....

    I was looking into the gene thing again. And found that the specific genes that I have DO equate to a predisposition for celiac, just they are a bit more rare.

    The DQ2.2 and DQ7 apparently pair together to do exactly what the DQ2.5 does by itself.

    At least, that is my understanding.

    There's apparently a bit of a link with DQ7 and neurological issues with gluten...? correct me if I'm wrong.

    I'm just getting the hang of some of this with the gene analysis.

    I'd still like to be tested for other food allergies. But, I think I'll go with the old elimination diet. Much cheaper.


  16. I believe that muscle gain is entirely possible after going gluten free. I've been lifting weights and doing yoga/pilates for about eight years. And much like you, I started eating healthier by adding whole grain wheats and such to my diet. I lost about sixty pounds. * I was getting rid of post pregnancy weight* at 5' 5" ish, I was 104 lbs. *Underweight*

    I should have been putting on more muscle, but instead I just lost more.

    So. I had started with going wheat free about four years ago. Not gluten free. I didn't understand the gluten thing back then. But just on wheat free, I managed to put on ten pounds of muscle! Along with lessening of headaches, joint pains, sleeplessness, yeast overgrowth, skin problems...

    They didn't go completely away, but were much improved.

    Then when I got sick. Hit me out of nowhere. SICK. I lost a lot of that muscle.

    Started looking into my symptoms and had the gene test done. I went gluten free.

    After going gluten free, I've managed to put my muscle weight back on with the addition of a few more. I was gluten free for 16 months.

    I went back on gluten for three weeks recently to be tested, ALL my issues came back with a vengeance! Still working out joint pain and stomach issues.

    I'm Gluten Free again two weeks now and starting back into my weights. I was too weak to do them while on gluten.

    The muscle tone and energy are coming back.

    So, in my personal experience, yes.

  17. Apples have always made me feel extremely hungry. I never thought of it being a symptom of anything. I have had issues with digesting most fruits for a couple of years. The biggest issues come with apples, pineapple, mango, grapes and citrus fruits *the worst*. Of course, I find that since my three weeks of gluten, I cannot tolerate rice anymore. So, my food choices are even more limited now.

    Food of any kind is trouble for me these days. It sucks. I love food. My body, however, seems to disagree with me.

  18. So. I'm back on the gluten-free diet since Friday.

    I feel SO much better! I still have some blisters popping up here and there, random joint pain and my belly is still giving me hell for what I've done to it the past three weeks. But, I am certainly feeling better! Headaches have lessened too. I'm still napping here and there.

    BUT I've managed to clean my house and catch up with many things that I've let slip due to feeling so bad for nearly a month. *house work was really piling up on me*

    My doctor called to let me know that the blood test for vitamin and blood levels are normal! I was very glad to hear that. So, I've been doing very well for my body in the 16 months of being gluten free. Three weeks of gluten did not disturb my vitamin levels.

    Of course, I do take liquid vitamins here and there to make sure that I absorb them properly. So, I'm sure that has a lot to do with that.

    I get plenty of sunshine in the summer too. So, my vitamin D is perfect right now. Though, in the winter, I do also supplement vit. D too.

    I'm very nervous about the apt. with dermatologist on Fri. I will be getting my results for skin biopsy. So, I'm just trying to keep busy and distracted until then. Then the Celiac blood panel results should be in w/in a week after that. I just hope this goes well. The results come back indicating DH/Celiac. And I can have my diagnosis along with more help on some of my issues that have not yet cleared up on gluten-free diet.

    I'm all mania and worry right now. Gluten really seems to put my emotions through the wringer. I'm trying to stay calm. Just ride this out until it's done. Breathe...

  19. My doctor accepted the gene and stool test, along with positive response to gluten-free diet. I just gave her the printed pages and told her that these were the tests that I had done with an independent lab. She may have been more accepting of this due to my lack of insurance and knowing that I'm paying for everything out of pocket. Not sure. But she did accept them.

    She seemed quite impressed with all my research.

    I'm guessing it depends on the doctor and how you approach them.

  20. Will do!

    I'm relieved and ecstatic again today. I made an appointment with a family doctor and they listened to me and requested all the tests. She even gave me a price cut for "doing her job" and coming in with all the info that she needed! *I have no insurance, so I pay out of pocket*

    She wants me to get the blood tests and given my reaction to eating gluten, go back to gluten free as soon as the tests are done. *which is tomorrow*

    Between the skin biopsy for DH and blood tests, I should have a diagnosis.

    I still can't believe that.

    I'm in shock. Shocked that the doctor listened to me and understood all that I had to say. She looked up and printed of this 16 page report from the National Institute of Health to help her order tests and such.

    I'm just shocked.

    The receptionist was great. The student doctor was great and the doctor was great. I'm quite happy to say the least.

    I've gotta throw in a thank you to every one here. With out the info found here, this would not have been so easy for me.

    Can't wait to get back to Gluten Free!