Mea Culpa, Mea Culpa! I Need Your Help!

[penguin]

I know a lot of you are pissed at me right now, but I need your help.

I went to my allergist yesterday and I've developed a secondary allergy to gluten. Goody.

When I ingest gluten or touch gluten, I get hives. Not good.

I'm going to culinary school in 3 months. Therefore, the allergist has me trying gastrocrom to see if it will allow me to be able to handle wheat and not break out into hives so that I don't have to live on benadryl everyday.

OK - That's the story, does anyone have any experience with this drug? Thanks!

[GFBetsy]

Oh, my goodness. I'm so sorry. I wish I could give you more than sympathy, but I don't know anything about the drug. Hope someone else does.

And I'm glad to see you anyway.

[Mtndog]

chelsea- I haven't had any experience but I just wanted to let you know that 99% of us are just happy to see you!!!!! I hope you get your answers so you can go to culinary school!

[Lisa]

I am so glad that you need us, because we need you as well and goodness gracious, no one is mad at you for expressing your thoughts. I think that we are all better people because of your post.

I can't help you with topical contamination, as I don't know about that. I hope that someone will post to you soon.

I hope you find a good safe answer so that you can pursue your carrier and maybe you can help us all out in the long run. Follow your dreams, babe.

Lisa

[CarlaB]

Chelsea, I don't know.

I don't think anyone is mad at you. I think there are many who disagree with your reasons for leaving the board. It's actually been a pleasant atmosphere around here since the banning of one member and the postings of another anti-celiac member have stopped. There are mostly good threads here, it's just some get disagreements.

One thing you did do is motivate regulars to answer newbies questions. Another is that people don't always feel like everyone has to agree with them all the time ... they accept that we have different opinions and that the differing opinions add, they don't take away.

You are more than welcome to come back. You are very well educated and have a lot to offer. We'd love to have you re-join us.

[mouse]

Chelsea, I am so glad to see you back. But, I really don't know anything about the medicine. I hope it works for you so that you can follow your dreams. I personally think that your thread made people think. People don't have to agree with why you left and we should all be able to post what we feel without negativity. Hugs.

[eleep]

Oh my gosh, how weird -- but it's good to see you back! I don't know anything about that drug, but might Claritin be a suitable alternative to Benadryl? I don't know if it works on topical reactions or not, but I have less side effects with the Claritin.

[Canadian Karen]

Chelsea,

I know nothing about that drug but is wearing protective gloves an option? Ya know, the kind that you wear when you dye your hair?

Hugs

Karen

[lorka150]

hi Chelsea,

i've two questions:

1. i've a huge pharmaceutical list with the status many medications. does it have any other names? (gastrocrom isn't on it).

2. have you actually experienced the reaction? if it were a scratch test, it's quite possible it's inaccurate - those are only 50% affective (so says my internist and GI).

i'll check the list for you if there is another name.

[Matilda]

..

[AndreaB]

I don't know about that either Chelsea.

The gloves sound like a good idea. Do you get the same reaction breathing the dust?

I hope we see you more again.

We aren't mad at you, as has been mentioned you spurred us back to answering questions again, or a lot of times on my part, just saying "hi".

[pixiegirl]

Wow this is very interesting! As some of you may have noticed (I'm not sure anyone has!) I use to be on the list a lot and now I'm only on occasionally.. due to.. well a lot of stuff going on. However I was going to post about Gastrocrom but didn't because I was fairly sure it wasn't going to be well received. Maybe I should make a seperate post about it....

Gastrocrom is cromolyn sodium and its mixed with water and you drink it (and I'd like to add that you can't taste it and its clear so there is nothing gross about taking it). From my understanding its fairly benign as far as Rx's go. I couldn't find a lot of info on it but it is used in food allergies and to simplify things its sort of like drinking benedryl in that it helps stop the allergic reaction from food in your stomach and intestines.

I was diagnosed with Celiac and did well on my gluten-free diet but still occasionally had bouts of problems and I knew they were not related to gluten (I was sooo careful), so I went and had an endoscopy and colonoscopy and the biopsies showed I had eosinophilic gastroenteritis, which is thought to be related to food and enviromental allergies. The most common therapy is steroids but my allergist didn't want to put me on such powerful drugs with such serious side effects so he put me on Gastrocrom 4x a day (with meals and before bed).

Whether it will help you or not I don't know, its worth a try for sure...

However the part I was going to post but chickened out is this: My gut has healed up a lot since I've been taking the gastrocrom... I'm almost symptom free, which is what our goal was of course, to heal my leaky gut so larger particles of food don't enter my blood stream and cause that "allergic" reaction. Since I'm feeling better I often forget to take the Gastrocrom with every meal, not really a problem says my doc as long as I'm feeling better and take it most of the time.

What I have noticed is this (and it relates to Celiac)... while I was taking it 4 times a day (a period of about 8 months) I wasn't once glutened... now that doesn't sound so unsual for a long time very careful celiac right? Except when you add into the equasion that I eat out often due to travel, sometimes 3 meals a day for a week or two. Hard to believe I was never glutened. But I did believe that. But then a couple of months ago, I was in a restaurant with a friend and found out I was glutened.. they made a mistake.. sure enough about 20 minutes after eating I started to get symptoms of glutening... by the time I got home I was in pretty bad shape... terrible stomach pains etc. I thought about how the Gastrocrom helps with those symptoms with my EG so I figured that I'd try taking some then. And guess what... my symptoms of glutening backed off about 90%. The next day I felt pretty good, a little brain fog, but nothing like I normally get.

I have since done this once since then when I knew I was glutened with the same result.. it made my glutening symptoms go almost totally away. The reason I didn't post about it (and I know that seems totally unfair) is that 2 times isn't a very good test (I got very little gluten both times) and in the past when people have discussed things like meds to take away the symptoms or hide the response some members of this list have gotten pretty nasty. Many think for example that the drug they are working on at John Hopkins, I can't remember its name but it starts with a Z.... it blocks something that allows the damage to happen to our gut from glutening well a lot of people went off on how they would never take such a thing, how it might just hide the symptoms (I'm guessing they will test it to be sure the gut damage doesn't happen but thats just my opinion) and so forth.

I'm going to guess that the Gastrocrom doesn't stop the glutening from happening, nor the damage to your gut (I'm not sure about that) but I know for me.... it really stops the pain and other symptoms from glutening. I would never use it so I can eat gluten but with my travel schedule it would be wonderful to have something that will make me feel well enough so that I can get out of bed the following day should a gluten accident happen. And right now Gastrocrom does that for me.

Many times in the past I've seen posts that say "help I was glutened now what can I do", I've just realized that for me, the Gastrocrom really helps. I don't know if it would help if I took in a lot of gluten and I don't want to find out, being gluten-free to me now is just part of my life, I hardly even think about it anymore, but it is nice to have something that helps. Whether it would work with anyone else I don't know, but it does work for me.

If anyone thinks I should post this under its own heading I'll be happy too, a lot of people might not see it here but don't kill the messenger, I'm not trying to put up something that will allow us to eat gluten but in the case of an accident it might be just the ticket.

Susan

[Guest nini]

Chelsea, I'm not mad at you! YOu know that... anyway, my daughter also breaks out in severe hives just from touching gluten... From the previous post it appears that Gastrocrom may help with the outward symptoms but won't prevent damage from occurring... (just my interpretation?) anyway... With my daughter, when they do projects in school with flour, she either abstains completely, we find a suitable alternative (like providing rice flour for the entire grade for a flour based activity) or she wears gloves and a mask... (she HATES that option)... I'm of the zero tolerance camp which would probably point to you finding another option... First, see if the culinary school would work with you and allow you to work with gluten-free flours, so even if it's in the same room with non gluten-free flours, at least YOU don't have direct contact with it... (I still wouldn't advise eating it because of cc...) I don't want you to give up on your dream because obviously we need more celiac aware bakers and chefs out there... but you need to be careful, especially if you are that allergic. Hives are an anaphylactic reaction and CAN get much worse rather quickly, so while right now it's just hives, it could turn into breathing difficulties and worst case scenario, even death... is it worth the risk? (this was from one of my daughter's Dr.s...)

[penguin]

Chelsea,

I know nothing about that drug but is wearing protective gloves an option? Ya know, the kind that you wear when you dye your hair?

Hugs

Karen

No, I don't think so. I'd still breathe it in, it would still get on my arms, etc. I get hives if I ingest or touch it.

hi Chelsea,

i've two questions:

1. i've a huge pharmaceutical list with the status many medications. does it have any other names? (gastrocrom isn't on it).

2. have you actually experienced the reaction? if it were a scratch test, it's quite possible it's inaccurate - those are only 50% affective (so says my internist and GI).

i'll check the list for you if there is another name.

It's cromolyn sodium, it's not a common drug. It's primarily used for those with mastocytosis, where their MAST cells fire off all the time causing a constant histamine reaction. Gastrocrom stops the MAST cells from firing off, which is why it is also used in the prevention of food allergy symptoms.

Actually, both RAST tests and scratch tests were negative for wheat and gluten in March. I started having the reaction in May, when I started my gluten challenge (yes, the allergy is my fault) for the biopsy. It's obviously an allergic reaction, unfortunately. You don't get hives from anything else. And yes, it's hives. They come on quickly, spread quickly, and usually go away pretty quickly (within an hour or two).

First, see if the culinary school would work with you and allow you to work with gluten-free flours, so even if it's in the same room with non gluten-free flours, at least YOU don't have direct contact with it... (I still wouldn't advise eating it because of cc...) I don't want you to give up on your dream because obviously we need more celiac aware bakers and chefs out there... but you need to be careful, especially if you are that allergic. Hives are an anaphylactic reaction and CAN get much worse rather quickly, so while right now it's just hives, it could turn into breathing difficulties and worst case scenario, even death... is it worth the risk?

Yes, it is worth the risk, no question. The school is already working with me greatly, but there are certain realities about culinary school I have to deal with. First, you work in groups a lot of the time, and it's not fair to the other students, because gluten-free flours behave differently. Depending on what I'm working on, I will use alternate flours to make a seperate version from my group-mates. Otherwise, I will have to rely on them to tell me if it tastes ok, which is fine by me. There are just some things gluten-free flours can't do, and I will have to use wheat flour. I'll wear a mask during the baking section.

What the gastrocrom will do, if it works, is stop the allergic reaction before it starts, since it prevents MAST cells from releasing histamine, which causes the hives. I'm really hoping it works! I would only take it during culinary school, because it's cumbersome and expensive to take.

Pixiegirl - Thank you! That's exactly what I'm taking, and the way I'm taking it. I've taken 3 doses so far. It'll be interesting to see how well it works, though I have seen some things out there about it helping in the treatment of intolerances. It'll also be interesting to see how many of my symptoms are because I'm allergic and how many because I'm intolerant. I know I'm not JUST allergic, that wouldn't make me so anemic. I in no way think I'll ever be able to eat gluten, but it would be nice to be able to be around it without reacting.

[VydorScope]

pixiegirl,

Thats great about that drug helping with the symptons! I wonder if its helping with preventing damage?

Penguin,

I am gald your here still!!!!!!! I know nothing about this drug, but my worry would be the quantiy of gluten you will be playing with. It might be to much for any preventative measure to stop?

[pixiegirl]

I don't know about the damage.... I certainly don't want to eat gluten to find out... I'm guessing because of my two conditions that I will be re-scoped sometime next year to see how I'm doing.

But when I was scoped in Feb. I had no signs of Celiac, i.e. I was all healed up so even though once in a while I get glutened when out... (more often at people homes then restaurants..) it didn't damage my insides in any way that was visable in various biopsies.

But I've got to tell you the Gastrocrom really helps with the symptoms of a glutening for me.

Susan

[VydorScope]

I don't know about the damage.... I certainly don't want to eat gluten to find out... I'm guessing because of my two conditions that I will be re-scoped sometime next year to see how I'm doing.

But when I was scoped in Feb. I had no signs of Celiac, i.e. I was all healed up so even though once in a while I get glutened when out... (more often at people homes then restaurants..) it didn't damage my insides in any way that was visable in various biopsies.

But I've got to tell you the Gastrocrom really helps with the symptoms of a glutening for me.

Susan

I personaly doubt that the occasional gluten from CC would cause enough damage to show in a bisopy. And I would defeinlty not advise you go eat a loaf of whole wheat bread to find out!

Just was wondering if you had any more info. Right now we just do not let my son eat out, at 3 thats easy... at 15? Prbly impossible.

[CarlaB]

From what my doc, who's both an MD and a holistic doc, says if you heal the leaky gut, you're reactions won't be as bad or even noticeable at all. Her opinion is that eating out won't be difficult anymore if my leaky gut is healed. It's interesting to hear this from you. Maybe she's right. She's NOT saying I'll be able to eat big bowls of pasta, just that when I eat out, it won't be painful if I get glutened.

[jenvan]

I know a lot of you are pissed at me right now, but I need your help.

I went to my allergist yesterday and I've developed a secondary allergy to gluten. Goody.

When I ingest gluten or touch gluten, I get hives. Not good.

I'm going to culinary school in 3 months. Therefore, the allergist has me trying gastrocrom to see if it will allow me to be able to handle wheat and not break out into hives so that I don't have to live on benadryl everyday.

OK - That's the story, does anyone have any experience with this drug? Thanks!

No experience Chel, but yikes...I hope you figure something out soon. I want you to be able to pursue this dream of cooking too !

[pixiegirl]

I don't have much more info on the Gastrocrom...

I feel much better now since taking it for many months and its obvious my leaky gut is healing/healed... when I started it I got a list of foods I tested allergic too and when on a rotation diet and along with the Gastrocrom I did start to heal up. My allergist said that once my gut was healed I would probably be able to tolerate some of the foods I had positive allergy tests too and that is proving to be true.

However I react the same way to being glutened now as I did when I had the leaky gut, so I'm not sure if you heal yours up it will change your reaction to getting glutened. But if I take the Gastrocrom right after my gluten symptoms start it makes them less severe. But they start out the same as when I had a leaky gut, which is immediatly (within 20 minutes of ingesting gluten) and they are severe. I really believe the Gastrocrom helps with masking the symptoms.

Susan

[CarlaB]

I don't have much more info on the Gastrocrom...

I feel much better now since taking it for many months and its obvious my leaky gut is healing/healed... when I started it I got a list of foods I tested allergic too and when on a rotation diet and along with the Gastrocrom I did start to heal up. My allergist said that once my gut was healed I would probably be able to tolerate some of the foods I had positive allergy tests too and that is proving to be true.

However I react the same way to being glutened now as I did when I had the leaky gut, so I'm not sure if you heal yours up it will change your reaction to getting glutened. But if I take the Gastrocrom right after my gluten symptoms start it makes them less severe. But they start out the same as when I had a leaky gut, which is immediatly (within 20 minutes of ingesting gluten) and they are severe. I really believe the Gastrocrom helps with masking the symptoms.

Susan

This is interesting. It's also what I thought. I could understand why my doc was thinking my food sensitivities would go away, but the gluten reaction I thought would still be there. It just didn't make sense to me that it would go away since it's most likely why I have a leaky gut to begin with!

But if you're seldom getting glutened eating out, would you say that your gut being healed has perhaps made you less sensitive to contamination?

[DingoGirl]

wow....gastrocom sounds really interesting and I'm going to look into it for glutenings.

Penguin - nice to see you. Am wondering how long the baking segment of school lasts? Seems to me that your worst times would occur only during that portion and that is just ONE portion of the whole experience, so, though you may be miserable for that part - you could probably get through it and enjoy the rest of the experience, when you wouldn't be surrounded by flour....

[Jestgar]

Hi Chelsea,

I miss you!

I don't know anything about the drug, but I did think about how you could minimize contact.

Have you thought about getting some scrubs, like they wear in hospitals? I'd get a set for each day ( I think you can get them at Target) and every day come home, peel off your clothes and hop into the shower. You can put your scrubs into a nylon laundry bag to minimize flour dust in your house, and wash the whole bag by itself once a week.

I also minimize my exposure to laundry chemicals by double rinsing all of my clothes. It would probably work for flour as well.

Finally, I'd investigate lotions to put on after your shower. Tea tree oil helps me.

[Mtndog]

PixieGirl- what you are describing sounds optimistic for thosevof that get slayed by the smallest amounts of CC!! Llike you said, I wouldn't take it so I could eat loaf of bread, but it would be nice to have some relief from the symptoms. I take Phenergan which is an anti-nausea drug but it also has an antihistamine in it. It really does help, but it makes you sleepy and if you're already sleepy from being glutened it's a killer combo.

Chelsea- Let us know how it goes.... we need you both as a chef and on the board!

[tarnalberry]

Wow! What'd I miss?!

Anyway, I'm TOTALLY GLAD you find a school to work with you! That's GREAT!!!

As for the drug, I've heard of it - heck, you can get OTC cromolyn sodium in a nose spray. I haven't been on it, but it was one that my allergist thought about. Can you do desensitization shots? Might not be applicable at this point, though. Bummer. It's worth a shot. You've got three months to test it out. I don't know that it's going to help a lot, but it's something. Perhaps a combination of that along with an anti-histamine would be sufficient. It's not for too long, I would expect, and sometimes, we're willing to make pretty big sacrifices, arne't we?