I learned about this thread through the DAN! doctor my daughter saw for her autism symptoms. She reminded me to check it out. Well I remember in the beginning you had no idea why you could eat the sensitive foods later on. I was going to respond to this since I learned why from doing all of the reading on the Autism dietary changes, but I see you've already figured that one out. Yep, heal the gut by avoiding the "sensitive" foods and getting rid of any candida overgrowth. You get rid of the leaky gut that way, then you can eat more of what you were previously sensitive to. I just had no idea that KP was caused by diet, but it makes total sense, so now I am going to go the dietary route myself. We just have to find a way to fund it, lol! After that, I will find a way to fund my littlest one's testing too. I may do the ELISA panel, though, as it is probably easier to find and maybe get insurance coverage for it. Thank you for posting this! I passed the info on to my sister who has been fighting weight, horrible KP, allergies, and bad skin all of her life.

Celiac disease is an auto-immune disease, different from an allergy. Celiac Disease IS also a form of food intolerance. Not all food intolerances are symptoms of an auto-immune disease. But there is enough evidence stacking up about gluten-sensitivity to make many doctors say that we should assume at this point that gluten sensitivity is the beginning stages of the damage that is called "celiac disease" That is why I think it is negligent if we, you and I, were to suggest that anyone reading this simply cut out "most gluten" and see if they respond well - if their skin and whatever other issues clear up by eliminating gluten, take it very seriously and forget about the sprouted grain bread and don't think "you can eat just a little".

See, baronster, I think it''s quite probable you have celiac or non-celiac gluten sensitivity (pre-celiac) and by eating sprouted bread you are playing Russian Roulette. "Non-Celiac gluten-sensitivity" is now being considered the stage before great damage - the stage before the small intestine's villi are blunted and then flattened and in some cases totally destroyed - and it is considered that other damage may be going on that is not intestine specific.

"you don't have to have full-blown celiac disease with a positive intestinal biopsy (which is what conventional thinking tells us) to have serious health problems and complications--even death--from eating gluten."
from: Mark Hyman, MD: Gluten: What You Don't Know Might Kill You

What is it that leads you to think you have "just a digestive issue" as opposed to pre-celiac digestive issues? I forget what tests you've had. My bloodtest was negative for celiac and also neg for wheat allergy but my biopsy was positive for intestinal damage. Many celiacs do not have symptoms at all. Some only have a little acid reflux or maybe a little gas or bloating. Symptoms ranger from none (maybe just a few minor vitamin and mineral malabsorptions due to the intestines being attacked by antibodies) to mild to extreme alternating diarrhea and constipation. It took 20 yrs for one relatives celiac to be discovered and she was even told off an on to cut out wheat as it seemed like she had an "allergy" or an "sensitivity" that aggravated her eczema and atopic dermatitis. 20 years of possible damage from "just gluten-sensitivity" and a "bit of digestive pain" before anyone gave her a bloodtest and it was positive. My diagnosis took more than 30 years of my life.

Most celiacs don't get "an allergic reaction" to gluten though I'm not sure what you mean exactly. My first sign is a little acid indigestion. Day two or three I might have a little gut pain and maybe loose stool. If I keep getting glutened, the pain gets worse and I usually run a low fever. But honestly, that first time, if it's a little bit of gluten (wheat rye or barley) I wouldn't be able to tell the acid indigestion apart from indigestion I might get if I took a lot of turmeric one day. My symptoms are not the same as another gluten-intolerant's or another's and so on.

I think it is negligent for us not to be extremely clear about this.
If a person responds positively to a no-wheat (and no rye and no barley and no certified GF oats) diet and they do not have a positive "wheat allergy" test, they should consider treating themselves as a celiac or pre-celiac, possibly getting conventional western med tests but if those aren't positive that doesn't mean they should eat gluten.
I'm not sure we disagree about this but your continued eating of sprouted grain bread makes me think you haven't been told that it could still be causing you some gut damage and that while you seem to be managing your most obvious symptoms you could still be racking up damage, bit by bit, in other systems of your body.

The Gluten File - The Gluten File www.theglutenfile.com A collection of articles, abstracts, and websites related to
https://www.enterolab.com/StaticPage...yDiagnosis.htm
The Gluten File - The Gray Zone*/ Stool Testing The Gluten File

__________________
- bd: 45 yo F; I stopped scrubs, using salicylic acid after shower + homemade lotion; Burt's carrot soap or clean&clear on face; homemade body butter with Citric Acid as AHA; reg. exercise; OilPulling; a basic multi-vite plus Vit D, o3s, spirulina; eating GLUTEN-FREE DIET for Celiac Disease, and not much dairy as I get allergic reaction; Arms 95% clear, face neck chest 90%, legs 90% clear, butt is 99% clear. All dietary treatments above help reduce my sinus congestion and joint pain.

I`ve been thinking about what you said, so I am going to try 8 weeks gluten free, and see how my digestion is.

I have never thought about me having a gluten problem other than my original sensisitivity, that went away, but as I mentioned that was an immune response, as you have stated correctly, the gluten intolerenance is a digestive issue.

I have been trying to figure out what my digestion problem is for a while now, but I never really considered gluten until today. Thanks bunnyday.

Ok. So I can stop worrying about you for 8 weeks?


Hi Minasmom, did the DAN! (Defeat Autism Now!) Dr recommend doing the celiac bloodpanel? I'm curious. I know that research has linked autism to the mother's auto-immune disease
"Children of mothers who have autoimmune diseases such as type 1 diabetes, rheumatoid arthritis and celiac disease have up to a three times greater risk for autism, a new study finds."
Autism May Be Linked to Mom's Autoimmune Disease - Forbes.com

so I'm wondering if the Drs are responding by recommending screens. and Your sister sounds like me. Drs used to think you couldn't be overweight and have celiac disease, but guess what? you totally can.

__________________
- bd: 45 yo F; I stopped scrubs, using salicylic acid after shower + homemade lotion; Burt's carrot soap or clean&clear on face; homemade body butter with Citric Acid as AHA; reg. exercise; OilPulling; a basic multi-vite plus Vit D, o3s, spirulina; eating GLUTEN-FREE DIET for Celiac Disease, and not much dairy as I get allergic reaction; Arms 95% clear, face neck chest 90%, legs 90% clear, butt is 99% clear. All dietary treatments above help reduce my sinus congestion and joint pain.

Hello Everyone!

I'm new to the board and I wanted to drop a note and say hi and pay my regards.

Thank you,

Hi Bunnyday.
It has been 5 days of gluten free. I noticed by the end of day 1 that I didn`t have any digestion issues, neither was I tired, and by day 2 my dry lips were normal. I have chronic dry skin and must have a zillion creams, including pure vitE that I sleep with overnight, but my skin always looks parched, also the skin on the inside of my fingers look ususally wrinkled or like I am dehydrated. Now day 5, the skin on fingers are normal and I look hydrated and less dry. I went the whole 5 days without gluten, except at lunch today I had sushi, so the soy sauce had wheat and so did the coating on the dynamite roll.

Right away I noticed certain symptoms return, stomach gurgle, burping, ghost pains in neck and near liver that have been present since I think this being a problem for me. Number 2 was healthy and normal for the first time in months.

Back in the beginning of November I went out for dinner with BF, and had deep fried Pub food that I haven`t had in years, I ate exactly what BF ate, along with a couple of beer. Went home that night and had terrible gas, then spent the night on toilet, thought something I ate was bad. Slept for 2 days straight, finally going to medical clinic 3 days later, advised I must have a virus, and given a bland diet to follow.

Anyways I can look back now and see this was the beginning of me eating more bread products, I actually craved them and gave in during Christmas and continued until 5 days ago. Also I see this the beginning of a switch going off, maybe celiac, maybe just intolerant to gluten, not sureeyet.

Now I see how bad gluten was affecting my health and wellbeing. I kept thinking my small intestine was somehow damaged or blocked, or a valve was closed or something, I just never considered gluten intolerance.

BD....can you give me some advise....what do I do now.....do I bother getting tested for celiac by MD, and if I am not celiac do I still have to avoid all things with wheat, like sauces and obscure things.

I read that if you follow a gluten free diet other intolerances like sugar and dairy clear up in a month or so of eating gluten free. What do you think of that. All dairy or just Caisen.

Any other suggestions or advise for me as I feel overwhealmed by the celiac websites, and can`t wrap my head around the info and understand it.

Thanks again for picking up on problem and making the suggestion, I owe you big time, it couldn`t have happened at a better time for me, I am starting a new career direction and appreciate the extra energy and awesome feeling after I eat.

Baronster, wow! all this info. I mean, I was concerned about the possibility but, yeah, you sound very classically gluten-intolerant. we can call it even, ok? Your story here helped me consider food and digestion issues as very real problems ultimately leading to what may be life-saving information about celiac disease in my family. So I already owed you, ok? I'll try to be concise but, well, we all know that's not my strong suit.

I recommend you decide quickly if you want to get tested since you need to keep eating gluten until you do a bloodtest. Possible reasons are
1) if it will give you any tax break or benefits that offset the cost of buying gluten-free food [the canadian system may differ from the US in this area so I won't have answers, in the US you can write off the excess cost. in canada can you get subsidized food?]
2) if you are ever in an institutional setting that would require a dx to support your diet [like living in a dorm at college - they would want an MDs diagnosis possibly - or a hospital or nursing home or something...]
3) in the USA, celiacs are not eligible for military draft.
4) if it will make you take the diet seriously where you might not otherwise [some who don't get dx'd keep thinking they can "eat a little and be ok" and that's not the case.]
5) if it will help extended family etc. take it seriously so that they will pursue testing and/or also not try to feed you [or celiac children] gluten.

Possible reasons not to test:
1) if none of the above reasons are motivating and you know you will be careful about hidden gluten and also stick to the diet without cheating just based on your reaction;
2) if a positive result would raise your insurance rates [a USA issue, probably not CA];
3) if you have been gluten-free long enough that it would skew your tests [you might be celiac but have basically already treated yourself];
4) if you have been gluten free and to get testing you'd have to eat gluten but it makes you way too sick.

Usually it is considered safe to test if you have been eating gluten for at least 4 to 6 months. if you have only been eating gluten again for a couple months, it may not be enough to show bloodtest results.

Also to weight in your decision, there are false negative bloodtests. In other words, a negative bloodtest doesn't completely rule out celiac. In one study in 2004, 12% of patients with biopsy proven severe celiac (total villous atrophy) did not have positive bloodtest results, 67% of patients with biopsy proven celiac with partial intestinal damage (villous atrophy) also did not have positive bloodtest results. In the USA, many Drs don't pursue the biopsy unless there is positive bloodtest but the bloodtest obviously doesn't catch everybody so relying on testing in these cases is kind of messed up. Some Drs will diagnose based on positive response to a gluten-free diet. Local celiac support group would be able to point you to the best and most supportive Drs.

In my opinion, even if you don't do testing, yes, you stop eating gluten entirely based on your response and learn about the hidden stuff. it's not oxygen or water, we technically don't need it to live. There is enough evidence mounting that gluten-sensitivity without positive bloodtests (serology) is just a precursor to damage. As further research is done, evidence is pointing to celiac being only the tip-top of an iceberg - the rest of the iceberg is a variety of gluten-sensitive responses that may ultimately lead to the top of the iceberg. Many people who fall into the rest of the iceberg choose to prevent becoming full-blown celiacs by adopting the GF diet based on their response. There are very prominent Drs and researchers who are pushing for this to be more accepted in western med thinking.

Yes, for many who adopt a true GF diet, other intolerances can eventually go away. My response to casein has been greatly reduced. I don't indulge in cheese every day but I can have it once or twice a week without noticeable response (particularly little blistering on my skin.) I can use butter a bit more. What do you mean by "all dairy or just casein"?

I know you already know about eating unprocessed, good food so that will go a long way to helping you deal with a real GF diet. Most of us accidentally ingest a little bit here and there as much as we try to avoid it so the more you can avoid by your own knowledge and effort, the better.

eating out locally for you, here's downtown, they also have info for various neighborhoods:
Gluten Free Vancouver & Area BC Restaurants - Celiac Scene Map

Thanks again to you, baronster for sharing your journey.

__________________
- bd: 45 yo F; I stopped scrubs, using salicylic acid after shower + homemade lotion; Burt's carrot soap or clean&clear on face; homemade body butter with Citric Acid as AHA; reg. exercise; OilPulling; a basic multi-vite plus Vit D, o3s, spirulina; eating GLUTEN-FREE DIET for Celiac Disease, and not much dairy as I get allergic reaction; Arms 95% clear, face neck chest 90%, legs 90% clear, butt is 99% clear. All dietary treatments above help reduce my sinus congestion and joint pain.

p.s. very good pdf's of safe and unsafe food for gluten-intolerant's are here, this way you can print them out and just have them on hand instead of digging thru celiac forums:
East Texas Gluten Intolerance Group
East Texas Gluten Intolerance Group

__________________
- bd: 45 yo F; I stopped scrubs, using salicylic acid after shower + homemade lotion; Burt's carrot soap or clean&clear on face; homemade body butter with Citric Acid as AHA; reg. exercise; OilPulling; a basic multi-vite plus Vit D, o3s, spirulina; eating GLUTEN-FREE DIET for Celiac Disease, and not much dairy as I get allergic reaction; Arms 95% clear, face neck chest 90%, legs 90% clear, butt is 99% clear. All dietary treatments above help reduce my sinus congestion and joint pain.

Gosh, thanks so much I knew you`d come through for me.

I am not going to eat gluten just so I can take the test, I can`t now that I know what makes me feel bad.

Here is a question for you, someone told me about a bakery that had very good gluten free fresh bread, so I went there. They told me it was gluten free, but is baked, and cut, and so on along with wheat bread, they are worried about a reaction so they don`t even call it gluten free, worried about lawsuits I guess.

I bought it and ate it, and felt nothing negative at all, do I have to worry about contamination like allergies, if I was a celiac, or is that going to far.

Hi guys,thanks for sharing your experience with me.I am new here n u have taught me a lot.Thanks again to everyone.I am basically researching n trying to determine what i should do to start on my journey in battling kp.I came across a website pilarical.com that sells pills that they claim is the cure or remedy for kp.Has anyone heard about this?Anyone, Kebod, Elsa Zoe, or anyone else can u please give me your opinion?Thank u very much in advance..

I understand. It seems that decision is getting more common among people who find themselves gluten-intolerant - when they find out that testing can have vague results unless the intestine is really really damaged, they just opt to stop the gluten. I'm not saying I recommend it or not but it is a very understandable position.

Them being worried about CC raises an alarm for me.
I would wait to go back to that bakery till you've been very strict with yourself for a couple months. and then only if you know that they mix the dough and work it and bake it and cut it on separate equipment. There is a lot of risk for cross-contamination (CC) in a place like that. It would seem to me that you have a lot of choices in your area and if you check local GF eating info, you might even find out if celiacs give that bakery a thumbs up or down.

The range of sensitivity in documented celiacs given by U of chicago's celiac dept. is 10mgs to 100mgs daily will keep doing you harm. Below the 10 mgs, there seems to be no detectable damage though some people seem sensitive to lesser amounts; over 100mgs, definitely damage keeps going on. 10mgs is an eighth of a baby-aspirin, or one fiftieth of a 500mg pain reliever. it's pretty small - so the less CC we expose ourselves too, the better.

You do have to watch out for CC. It is not considered going too far at all. You may not always feel your reaction depending just how sensitive your immune system is and how your health is otherwise.

Think about the strong peanut allergy some people have. Well, celiac disease is like that except the mortality risk is spread out a bit over time. The risk for developing another autoimmune disease on top of celiac is about 9 times that of the general population. Risk for cancer, osteoporosis (from malabsoption of calcium, phosphorous, etc...), thyroid disease, diabetes, lupus, rheumatoid arthritis, neurological problems, seizures, recurrent miscarriage and even cardiomyopathy (heart muscle disease) is all increased by various factors. (not to mention KP, not life-threatening but it what brought us all here...) It's ridiculous isn't it? but it's the malabsorption (and you know about that!) combined with the inflammation of an overactive auto-immune reaction.

So why keep that reaction "turned on" by getting lots of CC here and there? I recommend being very strict with yourself for about 2 months and not eat things processed in the same facility with wheat. I know you can do it. If you're going out with friends or bf, either eat beforehand or be certain the restaurant is highly recommended in the GF community and be clear about your needs to the server. After that, you'll have a much better baseline for your reaction as your immune system should be fairly calmed down. (2 months is not a recommendation I've read anywhere, it's just a humanly possible time in my mind to be very strict...) I'm not saying "eat gluten" after 2 months, don't. Just keep your CC risk factor very low for a while.

you can do it! you can do it! you can do it!

__________________
- bd: 45 yo F; I stopped scrubs, using salicylic acid after shower + homemade lotion; Burt's carrot soap or clean&clear on face; homemade body butter with Citric Acid as AHA; reg. exercise; OilPulling; a basic multi-vite plus Vit D, o3s, spirulina; eating GLUTEN-FREE DIET for Celiac Disease, and not much dairy as I get allergic reaction; Arms 95% clear, face neck chest 90%, legs 90% clear, butt is 99% clear. All dietary treatments above help reduce my sinus congestion and joint pain.

Dear Baronster,

I just wanted to say thank you. Tomorrow im going to really cut out dairy, wheat, sugar, and all that bad stuff. I have really wanted to do that for awhile now because a close friend of mine cut out sugar for almost a year now a lost lots of weight and is super healthy. Every time i start it i don't keep up with it.

Im 17 and i have have suffered for KP for about 6-7 years. I remember times when i would wear long sleeves when i lived in las vegas. It would be 100 degrees and above and i still wouldn't wear short sleeves. I am very lucky because i have the best skin of any of my friends in the sense that i never get acne, and if i do its one or to pimples. But to make up for that is my KP. I hate it. And also i have cradle cap which is something babies get and some adults and i could never get rid of it except for some prescrpition stuff and that only worked if i used it daily.

Anywho, when i thought about it, it wouldn't make sense for people to have a disease with a cause, and i truely believe that is because of the diet we as Americans have. I hardly ever eat junk food as it is, and still i have these skin issues.

Skin Diseases reflect internal problems. So it only makes sense to treat it internally.

For as long as i can remember i told myself when i have the money ill do this and that, but why treat KP from the outside when i can truely get rid of it and be healthy too.

Basically i just want to say thank you. You've really inspired me. After i read your article i starting tearing up because of you being and inspiration and now realizing i can finally take control over my body.

Your story is more helpful than the tons of money Ive wasted on products and going to the dermatologist, those were just empty promises.

Truely Thank You,
I'll keep you posted on my progress,
Thanks for the inspiration!!!!
-Ashlee

This thread says the cure is on page 76 but I didn't see it... am I missing something?

hi, i sent you a private message recently, but i am new to this so i dont know if you got it...so i just figured out this way of posting a message....anyways....My name is jennifer, im 23, and i have had kp all my life. To summarize what i wrote before, i just started the no wheat, gluten, dairy, yeast, and sugar diet. But it is nearly impossible to find recipes, without all of these foods, since i know that you had to stay away from these foods for awhile, i was just wondering if you could help me out with your recipes. Some questions...it has been four years since you first started this, i was just wondering if your kp has ever come back, when you got rid of your yeast candida by starving it form sugar for a little, do you have to continue to not eating sugar in order for it to stay away for good, and you said you had redness, well i too have bumps that are red, did the redness completely go away for you, and has it stayed away this whole time? I could really use your help, and if anyone else has answers that are helpful.....please, and thank you!