"Super Sensitive" Celiacs.....

[jerseyangel]

  Jestgar said:

If you feel like a post is intentionally rude, report it. If you think it's unintentionally rude, either post something to that effect, or pm the person. It's really hard to tell how your words are coming across.

This is right. There is nothing to be gained by insinuating here on the board that certain people (in this case, mods) are being dismissive of others. If you truly feel that someone is out of line, that's the time to use the report button.

Personally, I put myself in the ultra sensitive category, knowing full well what it's like to continue to have problems long after adopting the gluten-free diet. It stinks, it's frustrating, there's no way around it. We all cope as best we can--I had hoped this thread would be a place of support and sharing. I posted already that if you use the testing strips and they work for you, fine. They're not for me. Why can't we agree to disagree on this and move on?

To continue to promote a product or idea long after productive discussion has run it's course borders on trolling--that's also against a board rule.

As a sensitive celiac, I don't feel belittled or dismissed by anything said here by a moderator--or anyone else. No one is doubting our situation, they are simply trying to unravel what may or may not be going on.

As a mod, I care very much about the integrity of this board. We have to remember that anything we post is going to be read by people already confused about the gluten-free lifestyle and there's a big difference between reporting what works for us and insisting that it is the best/only way and that everyone should agree with us. Blanket statements about the gluten-free status of foods only serves to scare people--discussions about specific situations would seem to be preferable.

I would love for this thread to get back on track--the suggestion about splitting the subject off into a separate forum has merit, but as long as all we're doing is arguing back and forth there doesn't seem to be much point.

[rumbles]

I did say something, - I'm trying to remind everyone to remember rule number one. As Fiddle-Faddle points out, it's one thing to politely suggest, but it's quite another thing to come across as dismissive and disrespectful. I'm just trying to remind everyone that words can hurt, and to consider the that other person's experience might not be the same as yours.

I don't believe that anyone here is intending to be disrespectful, but I do feel that sometimes there could be better words to get a point across, and encourage people to read their posts from the audience's viewpoint before hitting reply.

[jerseyangel]

  rumbles said:

I did say something, - I'm trying to remind everyone to remember rule number one. As Fiddle-Faddle points out, it's one thing to politely suggest, but it's quite another thing to come across as dismissive and disrespectful. I'm just trying to remind everyone that words can hurt, and to consider the that other person's experience might not be the same as yours.

I don't believe that anyone here is intending to be disrespectful, but I do feel that sometimes there could be better words to get a point across, and encourage people to read their posts from the audience's viewpoint before hitting reply.

I get what you're saying--and I completely agree. It's just hard sometimes to "see" the intent behind the typed words. Just as it is out in the "real world," there are people who are simply more direct than others. It does not necessarily mean that they care any less, though.

[GFinDC]

I think there is something to be gained from a contrary position on discussions at times. If everyone just agreed and went along we would miss out on the ensuing explanations that sometimes are very informative and helpful, and detail things better than the original post also. I think this recent discussion about testing and CC is worthwhile and helpful.

I appreaciate the efforts of the people who have done testing themselves and been willing to share the results here. While it may not be testing in a lab environment, it is more current information and relevant than what I usually see available from other sources.

[dilettantesteph]

  miles2go said:

Well, I can see both sides of the argument as having merits. But I'm a Gemini, middle-child sort-of-a-thing.

I moderate the public e-forum at the University of Maine and this is tame in comparison.

I'm not sure if I'm a super sensitive or not. When I get cc'd, the reaction time is about 15 minutes and the last one was a pot that contained Cream of Wheat (ironically, for the dog who has digestive problems) and had been washed three times.

Margaret

Sounds pretty sensitive to me...unless the person washing the bowl is as careful as my husband

[jerseyangel]

  GFinDC said:

I think there is something to be gained from a contrary position on discussions at times. If everyone just agreed and went along we would miss out on the ensuing explanations that sometimes are very informative and helpful

Great point--totally agree

[miles2go]

  dilettantesteph said:

Sounds pretty sensitive to me...unless the person washing the bowl is as careful as my husband

Boyfriend's wash was the first time 'round. I'm pretty sure the next box will be Cream of Rice.

Margaret

[Jestgar]

  miles2go said:

I'm not sure if I'm a super sensitive or not. When I get cc'd, the reaction time is about 15 minutes and the last one was a pot that contained Cream of Wheat (ironically, for the dog who has digestive problems) and had been washed three times.

Margaret

bleh.

Would do me in....

[Jestgar]

  GFinDC said:

I appreaciate the efforts of the people who have done testing themselves and been willing to share the results here. While it may not be testing in a lab environment, it is more current information and relevant than what I usually see available from other sources.

These concern me for a couple reasons.

1) Some of the people posting results have also stated that they aren't following the directions. I think this makes their results a bit suspect. Fine for you, if you're the one testing, but maybe inappropriate to publicize.

2) CC can come in unexpected places. If you dismiss other sources of CC (touching things and not washing your hands, for example) you may do yourself a disservice by eliminating innocent foods from your repertoire. And spend tons of money testing everything you eat.

3) It is possible to react to things and have that reaction mimic a gluten reaction (as stated by other board members). Again, if you dismiss this possibility, and focus only on potential gluten in your food, you may never get well.

As anything, testing is a tool, but should be used in conjunction with your own common sense.

[dilettantesteph]

I hadn't considered lyme disease. I do live in New York state where it is common. I have never been aware of a tick bite or gotten one of those rashes. Can people develop lyme disease without ever getting the rash? The symptoms sound a lot like celiac disease's symptoms. I didn't know that it could increase your sensitivity to small amounts of gluten. It would be wonderful if there was a treatment that could make me be able to eat mainstream gluten free foods. Are there cases where the symptoms completely clear up for weeks or months and then come back again? If that is so, I think I will make an appointment to get a test done.

[Mtndog]

So as not to get the poor thread even further off-track, PM me and I'll be happy to answer all your questions.

Also there is a thread here on c.com about it:

https://www.celiac.com/gluten-free/index.php?showtopic=36163

[Fiddle-Faddle]

  dilettantesteph said:

Can people develop lyme disease without ever getting the rash? The symptoms sound a lot like celiac disease's symptoms.

Yes, I believe that fewer than half of those already diagnosed with Lyme Disease had the rash, and many don't even recall ever having been bitten by a tick.

[MaryJones2]

We have a very robust Lyme Disease thread here for those who are interested and want to discuss:

https://www.celiac.com/gluten-free/index.ph...st&p=323575

[dilettantesteph]

  janetw said:

We have a very robust Lyme Disease thread here for those who are interested and want to discuss:

https://www.celiac.com/gluten-free/index.ph...st&p=323575

Thank you Janetw. That is very helpful of you. I hope you get completely healed soon.

[grannie4]

  Jestgar said:

I can do small amounts of soy oil (like soy lecithin in salad dressing) but any protein at all and I'm toast. Corn I can eat ~1 tortilla every couple weeks. I use this up also in salad dressing that has corn syrup.

Dairy I do fine with

Most of what I eat I make.

HI! I have been diagnosed since April, 2007, after a stress test showed an irregular heart beat!

This was the start of my long journey to where I am today.

Upon having prelim. test done for what the Dr. thought would be a stent, the Dr. found out that I was dangerous low on blood. I am admitted immediately, given 2 pints of blood then I was referred to another Dr. for follow up. From there, I had all the test and everything confirmed Celiac.

After 60 yrs. of being misdiagnosed. Now, after 2 yrs. on the gluten free diet, I have developed a problem in my mouth. It always feels like its peeling. (that's the only way I know to describe it)

I had the stool test from Enterolab and it showed also that I am allergic to Casien. I have to be honest, I have not gotten off dairy. Just wondering in you or anyone else has had this type of problem. I don't even know if it is dairy that's causing my problem. Its very annoying. I want to constantly sort of suck it to make the peeling stop.

I am open to any comment or suggestion.

I do use soy milk once in awhile. Just wondering of I could be allergic to other foods besides WRB& O"s.

My anti casein was 19 units. (I think normal is 10)

[HDRI]

  ive said:

I am too intolerant to gluten, dairy, soy and corn. My other sensitivities are not as bad, meaning that I can handle limited amount of nuts / legumes, e.g. on holidays.

But it would make my life so much easier if I would be just intolerant to gluten, dairy, soy and corn and wouldn't have my additional amine / histamine intolerance! I have some kind of threshold that if I eat too much food that is high in amine / histamine I would start to have unpleasant allergic reactions that may last for 2-3 days (depending on the amount of histamine / amines I ate). It looks like it did get better when I went gluten-free, but I still have these reactions... In addition to that for some unknown reason I do not tolerate almost all vitamins / supplements, even hypoallergenic ones and even the ones that other failsafers tolerate.

And yes, I too was able to eat anything, didn't have any allergies / intolerances whatsoever. In fact, nobody in my family has any known allergies. It all started 2 years ago, first dairy, then gluten, then soy and corn. I also had cats and a dog thoughout all my childhood / youth without any issues, but now I have "allergic" type reactions if I am in the same room with a cat or a dog. It is not a true IgE allergy, it doesn't show up on any tests. My body is reacting in a weird way to a lot of different things...

Hello Everyone,

This is my first time on this board and Am I Ever Glad I found this one first because I am living pretty much everything you guys are talking about.

I used to be allergic to cat hair and every time a cat brushed up against my skin I broke out in a terrible looking rash. The last time that happened I had a bottle of Alpha Lipoic Acid (600 mg per capsule) from Pure Encapsulations out in my car. I took two of them and withing 15 minutes the bad reaction/rash was totally cleared up. Needless to say I carry that with me every where I go now.

I have some food allergies too, like now I am allergic to brown rice because I was eating rice bread, rice milk etc. every single day. Hopefully this allergy will clear up again like it did before in about six months or so. Two night ago while driving in from SC I ate a snack that had brown rice syrup in it and almost immediately I started getting the brain fog and had trouble breathing, right on the verge of passing out. I took 2 Turmeric capsules and 1 of organic ginger and 2 capsules of one other herb (I'll have to look in my truck to see what the other one was) and the reaction cleared up about 85 percent which was a fantastic response.

I am starting an indepth study of what these herbs do because it would be fantastic to find some thing that would help us feel better if we get a little gluten in our diet by mistake.

I have a friend whose whole family has been Celiac for many years and so far everything she has told me has turned out exactly correct. She badgered me into giving up soy, corn, white potatoes, oats (because of cross contamination), millet (the new theory is that it does have some gluten in it), and every time I gave one of these up I felt a little bit better and I get feeling real bad if I go back and eat one of them. She says that after I stay off of the corn and white potatoes for a year or so I should be able to go back to eating them every once in a while.

She works at an Adventist Lifestyle center where they have doctor's, nurses, physical trainers for wotking out in their gym and people to do hydrotherapy etc. Carrie runs their school of massage and is one of their therapist's so she is very knowlegeable on lifestyle changes that can improve your health.

Plus they have 500 acres where they get a lot of time walking AND they eat a delicious menu like waffles smothered in fruit etc. They feed you fabulous meals and you still lose weight if you need to.

I saw one man who was there with severe diabetes and was taking 13 medicines for his diabetes and 3 for a bronchial condition. By the time he left their complete program he had gotten off all of his medicine for diabetes by his own choice and had completely reversed his diabetes and he had lost quite a bit of the weight he wanted to lose.

Well, I have to go now.

I have a doctor's appt shortly.

Michael

[Korwyn]

  lizard00 said:

Thanks for recreating the thread Patti

From what I remember of my post in the first thread: I know that as time as gone by, I've gotten more sensitive. When I first went gluten-free, I was so thankful that I wasn't like so many here who are sensitive and have other intolerances...

HAHAHA the jokes on me!

I think I finally had to accept it, too, that I was waaayy more sensitive than I thought I was. But for awhile I couldn't figure out why I would have "the burn" when I was soo sure that I hadn't had gluten. But I am realizing now that it was trace amounts. I think I wanted to believe that I could use the shortcuts like others, but I'm pretty much making everything from scratch these days.

On the lastest saga... I know I can't have dairy, but I have also eliminated soy and corn. How many of you are sensitive to these things, (dairy, soy and corn) or a combination of these things? I've known for a while that I can't handle soy because every time I cook with earth balance, it made me feel gross. I also have found that I can tolerate limited amounts of grains at one time.

This really is frustrating. I used to be able to eat anything, and now I am so reactive to foods. I feel like I live in my kitchen.

@Patti - Thank you for this thread also!

Lizard:

I'm there. I was up last night with an anxiety attack and myoclonus (muscle spasms/twitching) from TWO bites of a gluten-free/DF cupcake, but the frosting had soy. And I'm super sensitive to gluten as well - factory cross-contamination gets me too. I'm also sensitive to corn syrup and at least one other thing that I haven't been able to identify yet. It is very frustrating, discouraging, and sometimes depressing.

[darlindeb25]

Very good thread. It's always good to know there are others out there just like yourself.

[lizard00]

  Korwyn said:

@Patti - Thank you for this thread also!

Lizard:

I'm there. I was up last night with an anxiety attack and myoclonus (muscle spasms/twitching) from TWO bites of a gluten-free/DF cupcake, but the frosting had soy. And I'm super sensitive to gluten as well - factory cross-contamination gets me too. I'm also sensitive to corn syrup and at least one other thing that I haven't been able to identify yet. It is very frustrating, discouraging, and sometimes depressing.

I still have my moments when I get really frustrated and do seriously feel like I cook/bake all the time. I'm 6 months pregnant now, the good thing about that is that my sensitivity level has dropped off a bit. However, I'm facing a hospital stay and so I feel like I'm already thinking about prepping foods to have in the freezer for my stay and after I come home. My husband is great and cooks and makes sure that everything I eat is safe of ALL things... but a new baby makes your world all crazy!

The good news is that since I posted that, I realized that I'm not intolerant of corn, so at least I still have that. Although, a lot of mainstream corn tortillas/chips don't seem to sit well with me. I feel a million times better than I did, and have a ton more energy than I did a year ago, so I know it's worth it. But sometimes, it does wear on you... thankfully, those moments get less and less.

Hang in there, and be sure to get your towel (and maybe some peanuts, because the journey through the galaxy is hard!!! :lol: )! 0h yeah, and never forget, the answer is 42.

[jerseyangel]

Well! It's nice to see this thread active again!

I wish I could say that after 4 years I'm not as sensitive as I was....but I can say that I feel well the vast majority of the time.

What happens is when I have a long run of feeling great, I get "brave" and try new things--and that can backfire on me. I made the mistake of trying 3 new items all within the last 2 weeks. I reacted for most of this past week, and although I discontinued eating those things, I still have no idea exactly what the culprit was

Fortunately, I bounce back faster now--as soon as the offending food is cut out, I feel better pretty quickly

On the plus side, I've been able to add back corn and dairy--I'm so happy about the dairy....I'd been off of that for 5 years. I'm taking that slow, though.

[chatycady]

Cross contaminaion may be an issue, but I wouldn't rule out other food intolerances.

[lizard00]

  jerseyangel said:

What happens is when I have a long run of feeling great, I get "brave" and try new things--and that can backfire on me.

I do the same exact thing... it doesn't usually work out well for me either. My downfall is usually trying a new restaurant or take out. I'm wondering how much longer I'll do this until I learn...

And I only think my sensitivity has dropped because I'm pregnant. (I understand that's not all that uncommon) I got glutened early on, and my reaction lasted for one day... as opposed to the usual week/week and a half. I expect it to return full force in a few months.

[jerseyangel]

  lizard00 said:

And I only think my sensitivity has dropped because I'm pregnant. (I understand that's not all that uncommon) I got glutened early on, and my reaction lasted for one day... as opposed to the usual week/week and a half. I expect it to return full force in a few months.

Yes, I've heard that too. Maybe with a little luck your reaction time will "reset"

[lizard00]

  jerseyangel said:

Yes, I've heard that too. Maybe with a little luck your reaction time will "reset"

I was secretly hoping this damn disease would 'reset' Wishful thinking, I know.

I would be happy with a lesser reaction time. Thrilled!!

[darlindeb25]

I get brave and eat something stupid, then get set back 3 weeks. Actually, my diet is very healthy, very little junk food. I had never thought about the CC issue with all grains before, don't know where my head was. I always learn the hard way!