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      READ FIRST: Super Sensitive Celiacs Disclaimer   09/23/2015

      This section of the forum is devoted to those who have responses to gluten beyond the experience of the majority of celiacs. It should not be construed as representative of the symptoms you are likely to encounter or precautions you need to take. Only those with extreme reactions need go to the lengths discussed here. Many people with newly diagnosed celiac disease have a condition known as leaky gut syndrome, which can lead to the development of sensitivity to other foods until the gut is healed - which may take as long as one to three years. At that time they are often able to reincorporate into their diet foods to which they have formerly been sensitive. Leaky gut syndrome leads many people to believe they are being exposed to gluten when they are in fact reacting to other foods.
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      Frequently Asked Questions About Celiac Disease   09/30/2015

      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 Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can 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-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is 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 Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Supplements
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13 posts in this topic

I've found out the hard way that I am SUPER SUPER SUPER sensitive and I really need to take a bunch of supplements/vitamins for another health condition. Where do you get your supplements? What are the safest brands?

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for me it depends on what it is-- Usually I get mine at the vitamin shoppe and not gnc. They seem to be much more celiac aware and even when i had a question they would go into the manufacturers web site and make some calls to make sure things were gluten free.

i get a few more common things from Costco.

nature made, K-Something are teh brands I usually look for

good luck

I've found out the hard way that I am SUPER SUPER SUPER sensitive and I really need to take a bunch of supplements/vitamins for another health condition. Where do you get your supplements? What are the safest brands?

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I've found out the hard way that I am SUPER SUPER SUPER sensitive and I really need to take a bunch of supplements/vitamins for another health condition. Where do you get your supplements? What are the safest brands?

I'm on my phone and can't link, but google Kirkman Labs. They have a line of hypoallergenic supplements -- I've had good luck with those. They also offer trial sizes.

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I don't take very many. I found it helpful to keep them to as few ingredients as possible, and to take them in as concentrated a form as possible so that there was less filler to worry about. I found it helpful to do elimination/challenge diets on my supplements. I would stop taking one for a week and then start taking it again without changing anything else in my diet. That way I could isolate the effect that it was having on me.

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Hi there - I use Allergy Research Group's calcium citrate, magnesium citrate and zinc citrate without any noticeable issues. They have confirmed with me that all are free from wheat, oats, barley, rye, corn / maize, dairy and soya - so a good start!

They also have a multi vitamin and mineral, but the vitamin C in that is currently from fermented corn, just in case you have any issues with corn. I didn't think I did have, but it turns out I am wrong! I think they are planning to change this to source it from cassava in the near future, so perhaps worth watching that one.

I did also use ARG's multi B vitamin but unfortunately they have had a cross contamination issue with dairy (tiny traces, but I have found it is enough for me to know).

Best wishes, Carolyn

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I don't take very many. I found it helpful to keep them to as few ingredients as possible, and to take them in as concentrated a form as possible so that there was less filler to worry about. I found it helpful to do elimination/challenge diets on my supplements. I would stop taking one for a week and then start taking it again without changing anything else in my diet. That way I could isolate the effect that it was having on me.

Yeah, the more I'm calling around the more I realize that some may be "Certified" but they still share manufacturing facilities with other glutenous products. I've learned the hard way that I react to levels below 20ppm, so that's a no go for me. There's only been one brand I've found with dedicated facilities (Country Life) (not only do they have dedicated facilites but they also test for levels at 10ppm instead of 20). I completely stopped taking all my supplements the other day just to test it out. The main things I'm concerned about for maintaining treatment for my Lyme are all herbs, though, so I was thinking maybe tinctures would be safer? I called Herb Pharm and they have dedicated facilties. Woot!

Hi there - I use Allergy Research Group's calcium citrate, magnesium citrate and zinc citrate without any noticeable issues. They have confirmed with me that all are free from wheat, oats, barley, rye, corn / maize, dairy and soya - so a good start!

They also have a multi vitamin and mineral, but the vitamin C in that is currently from fermented corn, just in case you have any issues with corn. I didn't think I did have, but it turns out I am wrong! I think they are planning to change this to source it from cassava in the near future, so perhaps worth watching that one.

I did also use ARG's multi B vitamin but unfortunately they have had a cross contamination issue with dairy (tiny traces, but I have found it is enough for me to know).

Best wishes, Carolyn

I'm on my phone and can't link, but google Kirkman Labs. They have a line of hypoallergenic supplements -- I've had good luck with those. They also offer trial sizes.

Both Allergy Research Group and Kirkman Labs look promising, thanks! I emailed them to ask about manufacturing facilities. Would yall happen to know if they have dedicated facilities?

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A possible problem with dedicated facilities is that they have to get their materials from somewhere, and are they dedicated?

I thought that antibiotics were the accepted treatment for Lyme disease. Have you looked into that carefully? Maybe your best course of action would be to find a new doctor to treat your Lyme disease. That might help all your problems.

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Yeah, I'm realizing that absolutely nothing processed is safe for me. I verified some mustard that is tested at 10ppm and still react to that. So I'm thinking I've been ingesting trace amounts without knowing for the last year. Now I'm worried that the damage from that might be significant. So where do people that are as sensitive as I am get their probiotics? For the last week I've just been drinking a bunch of my friends homemade kombucha.

Lyme disease is a huge mess. There's a lot of controversy surrounding every aspect of it, from diagnostics to treatment to even the existence of chronic lyme. If you were bit by a tick and got to a doctor within a few days, yes, antibiotics for 2-3 months is the standard and will do the trick. However, if you were bit by a tick without knowing and didn't develop the infamous bullseye rash (50% of cases don't) or if you were bit by a tick and DID develop the bullseye rash but when you were taken to the doctor he said "This looks exactly like the EM rash, but Lyme doesn't exist in Texas." and you were refused antibiotics and that bacteria stayed in your body for 20 someodd years before rearing it's ugly head, then no, 2-3 months of antibiotics is not going to do much at all. Most people catch it late and by then it has spread and multiplied to a ridiculous degree within their body and therefore they have to be on antibiotics for years and years, which is obviously not good for the body. When I was dignosed a year and a half ago long course antibiotics were illegal in Texas. There was 1 Lyme doctor in the entire state and he could only use herbs because of the law. I had the choice of flying out of state for treatment (couldn't afford) or giving herbs a shot. From all the reading I've done herbal protocols have the higher success rate anyway with late stage lyme (I can't remember exactly but I want to say it was somewhere around 80%, while antibiotics had a 40% success rate with 20% of those patients continuing to relapse) so I decided to try the herbal route first. If it didn't work I would go find a new doc out of state and begin antibiotic hell.

The herbs started working almost immediately for me. It was insane. I was bedridden by the time I got on them with half my body paralyzed (including my face, bells palsy) and within a week I was up and mobile and back at work. Herbal protocols work by putting the immune system into overdrive and from there the immune system suppresses the bacteria. Within 6 months of being on the herbs is when I started developing all the celiac symptoms. My new theory is that being on herbs and putting my immune system into overdrive may have set the wheels in motion for autoimmune diseases I'm genetically predisoposed to (2 aunts with lupus, 1 uncle with Sjogren's/suspected lupus, mom and grandmother currently being tested for celiac).

So. I am actually about to hit the road to see a new Lyme doctor. When I was dx'ed my friends were in uproar about the lack of treatment available here but I just shrugged and said that if this disease is spreading as fast as they say it is, then it's only a matter of time before someone in power gets sick and things change. Which is exactly what happened. Some senator (I believe) got dignosed with Lyme and next thing you know a bill passed into law legalizing long term antibiotics for lyme treatment here. Now there are 9 Lyme doctors in Texas. WOOHOO!

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Wow. Thank you for the Lyme disease education. That is going to be very difficult to go through Lyme and super sensitive celiac. Do you know about compounding pharmacies? They make up drugs for you and that way you can be sure what the fillers are. Plus, you can tell them about your super sensitivity so that they can be really careful about how they do it. I would think that it would really complicate things as to whether it is the Lyme flaring up or a reaction to some food. I hope that you have some good good support. That is terrible that a state could regulate against a scientifically based medical treatment.

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Wow. Thank you for the Lyme disease education. That is going to be very difficult to go through Lyme and super sensitive celiac. Do you know about compounding pharmacies? They make up drugs for you and that way you can be sure what the fillers are. Plus, you can tell them about your super sensitivity so that they can be really careful about how they do it. I would think that it would really complicate things as to whether it is the Lyme flaring up or a reaction to some food. I hope that you have some good good support. That is terrible that a state could regulate against a scientifically based medical treatment.

No, I haven't heard of compounding pharmacies. But that does sound exactly like what I need, though. How would I find one?

And yes, I realize healing is going to be extremely rough. I met with my new Lyme doc today and she actually has Lyme disease AND Celiac disease herself, so I feel like I'm in good hands.

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No, I haven't heard of compounding pharmacies. But that does sound exactly like what I need, though. How would I find one?

And yes, I realize healing is going to be extremely rough. I met with my new Lyme doc today and she actually has Lyme disease AND Celiac disease herself, so I feel like I'm in good hands.

Wow..it sounds like you got a Dr. that will know what you're dealing with? I hope you get good answers.

Here in this part of the country we pharmacies called The Medicine Shoppe. They'll mix up meds. You could try using your search engine and type in compounding pharmacy and the name of your city and state. Hopefully something will pop up?

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I was going to say internet and phone book for finding a compounding pharmacy. I think that's what I did here. Your pharmacist might know of one.

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Wow..it sounds like you got a Dr. that will know what you're dealing with? I hope you get good answers.

Here in this part of the country we pharmacies called The Medicine Shoppe. They'll mix up meds. You could try using your search engine and type in compounding pharmacy and the name of your city and state. Hopefully something will pop up?

I was going to say internet and phone book for finding a compounding pharmacy. I think that's what I did here. Your pharmacist might know of one.

Thanks! I found one in town :)

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