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Member Since 29 Oct 2010
Offline Last Active Jan 25 2013 09:50 PM

#811077 Gluten Exposure

Posted by on 14 July 2012 - 05:40 PM

I don't think I'm "ultra-sensitive"....I think I'm "Celiac".
The medical literature says even traces of gluten can make a Celiac sick. It doesn't say only "ultra-sensitive" Celiacs will get sick from traces of gluten.

To the OP, you will find out if you are sensitive to products made in a facility that also processes wheat. Some people find they are and some are not.
I'm really very thankful that companies voluntarily put the "made in a facility statement" on their products. I wouldn't even have known that kind of sensitivity was possible if it weren't for reading here. And if I didn't know it, I would still be sick. I was just trying to let ya know in case you find out those things "get" you too.

Anyway, the first few months are difficult but you will find yourself able to enjoy fairs and car shows when your purse is stuffed with little goodies you CAN eat!
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#811052 Celiac And Time

Posted by on 14 July 2012 - 02:24 PM

You can live 47 years without knowing you are Celiac.
That's the only research I have.
And yes, I'm an American who will spend the rest of my life trying to pay for the "medical care" I had during the sickest years.
But eating doesn't cost as much as it used to.
We only "treat" once a week or so.
The rest of the time it's meat, fruit, vegetables and nuts.
Food budget went down actually.
Happy for you that you now know!
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#810305 Do You Think Everyone Has Celiacs?

Posted by on 11 July 2012 - 09:11 AM

I'm still telling everyone to get checked for Celiac...2 years into the gluten-free diet. But then I was sick for 7 years and I would have been grateful if anyone ever suggested it might have been Celiac. I don't think you are wrong to do that. If 90% of Celiacs are undiagnosed it makes the odds pretty good that you will alleviate someone's misery by telling them about Celiac. I have 11 people now who are gluten free and greatly relieved of their symptoms. None of them were told by a Dr. If I ever hear my sister has fibromyalgia or my friend does...I tell them to go to celiac.com and check the symptom list. I usually end my speech with if you know anyone with fibromyalgia please tell them about Celiac disease. I write celiac.com on little notes when I get into a conversation with someone about Celiac, or their symptoms, I can grab a note from my purse and tell them to check it out. We have to get the word out. I think I am an evangelist about it because it stole so much of my life and it is doing that to other people too. Most people are extremely grateful for any avenue to follow up on to hopefully feel better. Some of those 11 people are children whose mom's listened to me. I feel very good about that. No, not everyone is Celiac, but those who are cannot ever get well unless they hear about Celiac and what gluten can do to you. So I say, keep it up! I'm going to!
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#810301 Before You Knew It Was Gluten...?

Posted by on 11 July 2012 - 08:45 AM

Yes, whenever I played susie homemaker and baked bread I would end up feeling like a truck hit me and I would go to bed early and wake with a migraine headache. I felt like I had worked in construction instead of baked bread for my family. I don't know how I didn't figure it out sooner. But I didn't. I have sudden memories from childhood of dizziness and nausea and gripping fear after eating lunch with other kids. They said I was a nervous kid. I was a glutenend kid.

Yes, another episode where I should have figured out it was gluten but didn't.
I did Atkins low carb diet and had a miraculous recovery from all sorts of ailments, headaches, fatigue, diarrhea. I had energy like I had never felt before in my life. I noticed it was strange that I felt way better if I didn't go out to lunch with anyone so I only did it once about every 6 months. I thought I was just "weird" that way. It seemed like social anxiety...but it was gluten. I happily stayed on Atkins for a long time.

Only problem is....I got married again and started playing Susie Homemaker again.. Baking, cooking, and eating with my family.

Then I became depressed, anxious, fat, and lazy. I had headaches and skin sores that wouldn't heal and was told it was "Fibromyalgia" and would not get better. I believed that for 7 years. THen I found c.com.

Now I live again. So yeah, gluten was a problem my whole life...I just didn't connect the gluten particles. Wish I had, but now I know.
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#809429 A Newbie With Lots Of Questions!

Posted by on 07 July 2012 - 10:07 PM

Hi Alexa!
So happy she is feeling better!
It's wonderful you listened to your friend and tried it out!
I'm not one to encourage testing if you already know gluten is a problem for you.
However, some people really, really, want an official diagnosis.
My experience was like yours in trying to find answers. Dr.'s were not helpful at all.
So when I found out about gluten I just went gluten free.
She doesn't need the biopsy if you are willing to help her stay gluten free and learn how to live that way.
You can either take the other kids gluten free too and assume they have the same gluten intolerance, or try to get them tested while they are still eating gluten.
The problem is that if they are Celiac, they can be doing damage even though they don't show symptoms yet.
The decision is yours and you will see a lot of various opinions about testing. If you have taken her off of gluten and decide to get the biopsy, she would have to go back to eating gluten for several weeks and she still may test negative since she has been gluten free for a while.
I struggled with this decision for my son too. But couldn't get a Dr. to agree to test him, so he decided to stay gluten free because he feels absolutely better just like your daughter.

I don't think you can know which parent gave her the gene without both of you getting tested. Or you could get tested and see if you are the same.

To know for sure the other kids would have to be tested, but you could also assume they run the risk and take everyone gluten free.

No one can really know who will and who will not develop Celiac even with the genetic testing.
There have been people who tested their kids once a year and let them eat gluten until they test postive.
Other people just decide that is too risky and take the whole family gluten free.

Good luck with your decision, I hope this helps a little.
Nothing is going to scare anyone here off!
We have all struggled with symptoms and illness and some of us have kids with Celiac/Gluten Intolerance and have had to make the decisions you are making. It's not easy. But keep asking questions and thinking about what is best for you and your family. We don't scare easily around here. ;)
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#808843 Kraft And Cross-Contamination O.0

Posted by on 05 July 2012 - 03:45 PM

I remember when I was new at being gluten free.
It was a shock to find out that no gluten ingredients did not necessarily mean no gluten CC.
Gluten CC is always a possibility if it isn't made in a dedicated facility.
But I still find it helpful to ask people what they use and what brands they trust.
I don't really want the legal definition the company uses given back to me. (Although that too is helpful in learning to read and interpret labels.)
I want to know from real live Celiac's who have experience with products, reading labels, and using these foods for many years more than I have in trying to be gluten free.
That is the value of this forum.
You can learn about the scientific aspect, but you can also learn the practical applications and that is how I found out that I am a Celiac who reacts to products that are "made in a facility that also processes wheat" In the beginning I dismissed this as a concern, but reading posts here...yeah, it was making me sick...cause I got well when I eliminated them. I couldn't have known that or tried it without the input of other's here.

...and for what it's worth....
Don't burn your bridges...
It takes a village to heal a Celiac.
This is my village and their knowledge helped me heal.
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#808827 Can Someone Explain The Iodine Thing?

Posted by on 05 July 2012 - 02:23 PM

This is copied from the body of the article in the following link. I guess that is where I saw the antibodies can stay in the skin for up to 10 years. If it wasn't Dr. Green, I had to find who said it for ya!! It is near the end of the article.

Neither IgA deposition nor circulating antibodies correlate with gluten intake in short-duration studies; however, some studies have suggested a correlation with complement deposition. Avoidance of dietary gluten for 10 years or more has resulted in loss of cutaneous IgA deposits, which then return upon reinstitution of gluten in the diet.

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#808799 Can Someone Explain The Iodine Thing?

Posted by on 05 July 2012 - 01:05 PM

I healed a little by being gluten free, but the rash and sores stayed there until I got serious about limiting iodine. Thyca.com was the only way I could do it. I had no idea that canned goods had iodine in the lining until I went there. It helped me so much. If iodine is a problem for you, you will be able to tolerate it later, but only after the sores heal. I can use iodine now but really noticed the sores burning and itching if I consumed iodized salt accidentally for example. One must be totally gluten free for iodine limiting to work.

The antibodies can stay in the skin up to 10 years...according to Dr. Peter Greene, and it takes some people up to 2 years to heal.

It took me a year and a half.
But now I'm healed.
You just have to experiment to see what aggravates your DH.
You should easily know if Iodine is a problem for you with a brief elimination and then a challenge.
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#805621 Possible Dh... Would Like Your Input

Posted by on 22 June 2012 - 08:05 PM

To OP:
I am sooo sorry.
I was writing so much I missed your comments about being suicidal and my post ended up directly following those comments saying That is wonderful! I apologize for that appearing right after your self-disclosure about wanting to end it all. I meant wonderful that we would be having a picture bank of DH...

So sorry you had to go through that night of hell with suicidal ideation. There have been people who killed themselves during the misery of DH. That too is a travesty. I'm glad your friend intervened....and if nothing else about your descriptions convinces me that yours is DH, it is the fact that you were so miserable that you considered suicide. No other skin condition causes that kind of misery. You might also have been suffering neurological effects of Celaic. (I have gotten suicidally depressed following gluten contamination) Dr. Peter Greene writes about the misery of DH and how it takes some up to 2 years to heal. The antibodies can stay in the skin for up to 10 years. Also how Dr.'s underestimate the misery of the itch and stinging pain of the DH rash. It is only by reading of other's experiences that I came to know what I really had was DH, not neurotic excoriation, fungus, acne or a virus.

As Squirming said, Dapsone is not the answer...though it helps some with the pain. The real answer is gluten free and for those with DH it must be abolutlely strict gluten free as we are the ones most likely to develop the intestinal cancers. There is reasearch on that too. Unfortunately, many with DH do not test positive either by skin biopsy or intestinal biopsy, but nevertheless they have DH. Given the long term consequences of developing other A1 auto-immune diseases or lymphoma or intestinal cancer it is all the more imperative that people know about DH and gluten.

If those depressive episodes return when you have gotten gluten, you should remember that severe and profound depression and anxiety are also consistent with Celiac.

I do hope you never have a night like that again. I got a prescription for Xanax to help me deal with the severe depression that hits following accidental gluten. Thankfully I haven't had to use it in a long time, but it was a real life-saver for me...when there were no friends to text me in the middle of the night.

Written with care and concern.
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#805590 Possible Dh... Would Like Your Input

Posted by on 22 June 2012 - 05:09 PM

The maddening itch of DH is like no other affliction on earth that I have ever read described in any medical literature. Your description of the itching would be consistent with DH. As for how the rash appears, there are many presentations and mine never looked like the photo's online. However, it all healed after 14 months gluten free. Mine took a really long time to heal, so if you are seeing results already that is great! The rash, as you have read can take many forms and before I got the "weeping" from my rashes, I would have raised bumps that were either flesh colored or hive-like or mosquito-bite-like. Later, I entered the "weeping" and burning stage and it was awful awful awful. It is hard to say what a rash is...that is why it is so hard to diagnose. But the DH rash of Celiac is only healed by gluten free, so that will be your telling point, unless you want to try to get the rash biopsied by a dermatologist. For that you should keep eating gluten. But many dermatologists don't recognize DH or know how to biopsy it. If it is DH, you will have to be really careful about traces of gluten as DH is really sensitive to it and possibly to iodine too. I don't know if this is helpful or not, but I wanted you to know that the rash doesn't always weep and it isn't always the reddish purple. Sometimes it is flesh colored or pink in appearance and the blisters also may be barely noticeable as they break almost as soon as they form.
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#798395 Dermatologist Was Mean, Made Me Cry...

Posted by on 25 May 2012 - 03:31 PM

It makes me soooo angry to read this. I'm sorry you had that experience. I was treated that way too, only I didn't know I had DH...or about Celiac...I just really wanted a biopsy...to find out what was going on. THe derms I saw...said you have neurotic excoriation and you need to stop picking on your skin. I was furious.... another insisted it was acne...it just doesn't make sense that they are not diagnosing this disease or even trying. Sorry I don't have great advice for you, but your post struck a nerve, and now my nerves work because I am gluten free.! I wish they would stop saying it is impossible to go 100% gluten free, I have heard that too.

I was horrified by the treatment I got from dermatologists.
I am horrified reading the treatment you got.
I am horrified by the number of undiagnosed DH pateints who were, are, and will be, getting the same ignorant treatment by dermatologists with their head in the sand. Wow.
People really have got to diagnose themselves when it comes to Celiac.
Thank God you got the biopsy....I was never able to convince anyone to do it.
I wish something could be done to educate dermatologists about DH.
So much suffering could be alleviated by a little education/knowledge about DH ,and effort on the part of dermatologists.
It just makes me sick. :ph34r:
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#795259 Can You Explain This One?

Posted by on 13 May 2012 - 04:33 PM

If you were gluten free for any length of time, the antibodies could have died down.
It is one of the reasons they used to think children outgrew Celiac.
At some point they appeared to be able to eat gluten again.
But then they noticed that these kids are the ones who developed the secondary autoimmune diseases and cancers associated with Celiac.
Don't een know if you are Celiac or not, but that could happen. The antibodies go away when your body doesn't have to fight wheat anymore. Then it takes time to build them up when you do start eating wheat.
It could be the percentage of gluten in the wheat too.

Bladder spasms are one of my symptoms of being glutened.
Many people here get bladder spasms from wheat/gluten.
They resemble a UTI but are not positive for bacteria.
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#794195 Smart Balance?

Posted by on 08 May 2012 - 05:05 PM

Could it be cross-contamination? Do they use wheat flour in the that kitchen? If so, very likely to be cross-contamination in my opinion.
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#783965 Upset, Confused, Venting, Scared & Frustrated

Posted by on 29 March 2012 - 12:41 PM

I'm so sorry I didn't see your post as I haven't been on in a few days. I got Irish's E-mail and wanted to reply though others have given you great information. My DH was awful and I had 5 to 17 lesions mostly on my face, some on the back of my neck, and behind my ears. I noticed no improvement in the appearance of the sores for months, but they did stop stinging and hurting and itching when I went gluten free.

After several months, I realized that salicylates were a problem. I indulged in a diet coke (benzoates, which sal sensitives cannot tolerate) and M&M's which are full of food coloring. I had an awful reaction with weeping oozing sores. I eliminated sals and iodine and started getting better, but anytime I would eat processed food I would have a reaction. I have never known why. Is it the preservatives? Are they using idoized salt? Finally I got to my wits end and gave up all canned food (iodine), all fruit (salicylates),and all preservatives. I have reacted to the annatto food coloring often used in cheese. I can't eat carageenan often used in dairy. It is a seaweed and full of iodine.

I gave up sals,benzoates,tartrazine, annatto, food coloring, iodine, and of course Gluten.

This did the trick. Just gluten and iodine did not. Unless it was just a matter of time anyway, and I am attributing it to sals. Either way, I am now free of DH and I don't eat any processed food except Dove chocolates. They do not cause me to react. I'm very grateful for that.

I have noticed that my DH is very senstive to Cc. My last episode was with a microwave where I warmed my tea and didn't cover it first. I got sores right away and couldn't figure it out for several weeks. The reactions to cc last for several weeks too. So here I am just one month now with no DH and I have been gluten free a year and a half.

If I had it to do over again, I would have eliminated all and I mean all preservatives, canned goods, and food colorings, and iodine and gluten all at once.

I can eat salicylates in fruit now once in a while. But sals are cumulative and I do watch my limit.

DH is maddening. I never eat out and I never will. It is so sensitive to CC that it is just not worth it.

I wonder about the nuts- are they certified gluten free? Sometimes nuts are run on the same lines as wheat and I have gotten sick from nuts that weren'tcertified.

I do want to test eating ice cream for the dairy and carageenan aspect of it, but I'm not ready yet.

Moist tea bags help relieve the pain. Or soak rags in tea if the area is larger than a teabag. I used to tape teabags to my face when my pain was really bad. I used Walgreens Pain Relieving Ointment for pain too.

Pricklypear and I were working on healing DH at the same time. We both thought sals were a culprit. I am glad to see others are finding that too. Maybe more people will get relief by watching sals too.

It was an absolute nightmare for 8 years. I have great empathy for the struggle you are going through. I don't know if there is anything helpful here but feel free to ask if you have any questions.

I hope you get relief soon and heal fast.

Incidentally Peter Greene says in his book that DH can react sometimes for no reason at all even with the strictest compliance in diet. Don't lose hope. If I can win, you can too.
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#780824 If You Have Celiac Disease, Would You Keep Your Children Gluten Free For Life...

Posted by on 15 March 2012 - 11:37 AM

I would keep my children gluten free as long as they lived in my home.
I well remember as a child feeling spacey, shaky, weak, anxious, nervous and having a stomach ache all the time.
It was normal to me and I thought everyone felt that way, they just handled it better than I did.
When I did complain of feeling ill, sick to my stomach or stayed home from school, the teachers and my mom thought it was just anxiety or being shy around peers or avoiding school.
It took me until 47 to figure out that all of these things are the the feeling of being glutened.
How on earth can a child communicate all the symptoms of being glutened?

I don't feed any children gluten and I never will. My sisters kids and my friends kids know they get gluten free treats at my house.
Gluten costs too many people too many years of their lives.
It should be a controlled substance in my opinion.
If it is true that 1/133 have Celiac and don't know it, then at least there should be a Celiac warning on every loaf of bread and package of cookies just the way cigarettes are labelled.
May be hazardous to your health.
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