Newly Diagnosed

[dionnek]

I was just diagnosed with celiac and have a few questions that my dr. can't answer:

1. I do not get sick immediately - mine is more I have a lot of d and ocassional vomitting (all of this just started since I had a baby 19 months ago - had other symptoms before that but NEVER had vomitted since I was a little child, so the vomitting is what made me go to the dr). Does this mean that I have not done too much damage to my intestines yet (the fact that I don't get sick right away)? I do have BMs about 6 or 7 times a day, which I didn't realize is not normal, but now they are painful and have blood clots in them sometimes. I have always been severely anemic and had low calcium (from what I'm reading, this was probably caused by the celiac). Does anyone else have this less severe reaction (or did you in the beginning)?

2. I am not lactose intollerant that I am aware of - is this something that can develop over time if you do not adjust your diet to be gluten free?

3. I was dx as hypothyroid during my pregnancy and have been on levoxyl ever since - will going gluten-free correct my thyroid problem and allow me to stop taking that medicine?

4. What will happen if I accidentally (or even on purpose ocassionally) have something with gluten in it (a cookie or piece of cake)? What kind of damage would occur with such a small amount?

5. Do I really need use separate tupperware/cookware/cutting board/peanutbutter tubs, etc. if I don't get severely sick when I accidentally have gluten?

6. What about shampoos/conditioners, etc.? I noticed that my coditioner has wheat in it this morning - do I really need to throw it out (I just bought this huge jug from BJs and I can't stand to waste things!)?

Any help is greatly appreciated!

[TCA]

Welcome to the board! I can help with some, but not all! Here goes:

1. Everyone is affected in different ways. My son get D immediately, but the irritability starts the next day. The BMs you describe sound very disturbing. A gluten-free diet should help these return to normal, but it may take a while.

2. If you still feel bad after being gluten-free for a while, dairy might be the culprit. The damaged intestines have a hard time handling the dairy sometimes. My kids couldn't do dairy at first but are fine with it now that they're gluten-free for a while.

3. ?????

4. ANY gluten will damage your body. That's why cross contamination is such an issue. My son gets sick if anything with gluten even touches his food. We went completely gluten-free at our house to avoid such issues. Even if you don't get sick immediately, the gluten will damge your body. This is not a diet you can cheat a little on and get away with. Accidental glutenings will happen if you eat out or with other people, but they still do damage, so every effort should be made to avoid it.

5. Yep - see 4.

6.My daughter continued to be very ill after going gluten-free. We figured out that it was becuase the Curel lotion we were using had gluten. I got rid of everything in the house with gluten and she started thriving. It was a pain,but well worth it. I gave my stuff to my parents. I can't stand to waste either!

I do hope you feel better soon. We're all here to help if you need anyting.

[eleep]

1. I thought my reactions were less severe, but as I've been healing and recovering from the removal of all gluten, I can see how truly sick I really was -- I think I'd just gotten used to living like that. It's been a bit of a shock.

2. Lactose became more of an obvious problem for me after a month or so where my diet was gluten-free (except it took another couple of weeks to figure out that my vitamins and shampoo were culprits as well). What I found was that I reacted very strongly to milk and soft cheeses -- by that time, I had enough of an awareness of what "healthy" felt like that I could easily identify what had caused the D. when I'd eaten something. I did the Enterolab testing partly because I wanted to know whether the dairy thing was lactose or casein (turns out I don't react to casein). At this point, I do eat a little bit of dairy -- mostly yogurt, which doesn't really contain lactose -- but I take Lactaid when I eat cheese or put milk in my coffee. This seems to take care of the problem and I hope I'll eventually not need the Lactaid as I heal more.

3. Can't speak to the thyroid issues.

4. My last accidental glutening put me out for a week and I lost a lot of weight in a very short time -- this was before I discovered Immodium. I was initially skeptical about whether I'd be able to stick with the diet or not, but now I have absolutely no problems with it -- friends can even munch pizza in front of me and I'm not in the least tempted. Again, knowing what healthy really feels like is what made all the difference.

5. My roommate and I are very careful about cross-contamination in the kitchen -- she's got her own toaster, we make sure things are free of crumbs and they go in the dishwasher when they're contaminated -- we just use clean knives and spoons in the condiment and peanut butter jars -- if she wants to dip a crumby knife into peanut butter, she scoops some into a small bowl first (she's a nursing student, so she's very tolerant of all this stuff). Having seen the light, so to speak, I'm not so concerned about the hassle anymore.

6. I feel you on the large container of wheat-containing shampoo thing -- I had a lot of Aveda products in large containers which I had to give away. The hair, skin and cosmetic products were the last thing I sorted out, partly because I couldn't quite believe that I would be that sensitive. However, I had an anxiety attack and then D. within an hour of getting a mouthful of shampoo in the shower (you can't always count on being so careful when things are wet and slippery and you're in a hurry to get to work!), so eventually that was just an obvious thing to deal with. It was a hassle, but I really don't think I started feeling consistently better until I'd gotten rid of all the possible sources of gluten in my life.

[tarnalberry]

1. I do not get sick immediately - mine is more I have a lot of d and ocassional vomitting (all of this just started since I had a baby 19 months ago - had other symptoms before that but NEVER had vomitted since I was a little child, so the vomitting is what made me go to the dr). Does this mean that I have not done too much damage to my intestines yet (the fact that I don't get sick right away)? I do have BMs about 6 or 7 times a day, which I didn't realize is not normal, but now they are painful and have blood clots in them sometimes. I have always been severely anemic and had low calcium (from what I'm reading, this was probably caused by the celiac). Does anyone else have this less severe reaction (or did you in the beginning)?

By "sick", then, are you meaning throwing up? Most people don't react to gluten by throwing up, but by getting stomach pains, and stool abnormalities (diahrreah or constipation) within a few hours or days. There's also body aches, headaches, brain fog, fatigue, and moodiness, and a number of other symptoms, but they vary - significantly - from person to person.

Blood is the stool is not normal, and hopefully something that will quickly be rectifed on the diet. If not, please continue to follow up with your doctor, because it is a worriesome sign.

2. I am not lactose intollerant that I am aware of - is this something that can develop over time if you do not adjust your diet to be gluten free?

Lactose intolerance is not always associated with celiac. It can be brought on due to the intestinal damage from gluten, but many many people in many cultures develop lactose intolerance normally as they age as well. So, yes, it can develop due to not following the diet, and yes, it can develop all on it's own, regardless of the diet.

3. I was dx as hypothyroid during my pregnancy and have been on levoxyl ever since - will going gluten-free correct my thyroid problem and allow me to stop taking that medicine?

There's no way to know for sure. The healing of the damage to your intestines may well alter the amount of medication you need, so you'll want to follow up with your doctor for a number of months to 'reoptimize' your dosage. Some people have been able to come off their meds. Others have not. You'll have to see what happens with your body.

4. What will happen if I accidentally (or even on purpose ocassionally) have something with gluten in it (a cookie or piece of cake)? What kind of damage would occur with such a small amount?

What will happen is that your immune system will see the gluten protien, and will recognize a subsegment of it, and wil bind to it. In this state, it will attack your intestines, and damage the villi. It's a basic chemical reaction in the intestines, and it only takes a crumb to do it. Yes, only a crumb. The reaction can go on, self-sustained, for 10 to 14 days. After that, healing can begin. So, getting glutened once a month is tantamount to not following the diet, and would increase your risks for nutritional deficiencies, intestinal cancers, and other autoimmune diseases.

5. Do I really need use separate tupperware/cookware/cutting board/peanutbutter tubs, etc. if I don't get severely sick when I accidentally have gluten?

Severity of symptoms does not correlate to damage in the intestines. See my answer to the previous question about why you need to avoid gluten! :-)

6. What about shampoos/conditioners, etc.? I noticed that my coditioner has wheat in it this morning - do I really need to throw it out (I just bought this huge jug from BJs and I can't stand to waste things!)?

Shampoos and lotions can get into your mouth if you get hair or your hands in your mouth. Again, symptoms don't correlate to damage, and you really do need to avoid gluten.

[dionnek]

Thanks for all the info. I've had a very hard time explaining to people that a miniscule crumb can do damage - everyone just laughs and says surely that isn't true. How do you get the point across to people that this is serious?! Is there a medical site or something that I can quote what you said about it taking 10-14 days again to heal, etc.?

Also, what is an "Enterolab test"? I'm wondering if this is something I need to have done to see if I have any other allergies?

Is Immodium safe to take? I had been taking a lot of it (a lot for my standards, which is probably not really that much) until recently when I figured it was better to let it all out

[pamelaD]

1. Stick with a very simple gluten-free diet: lean meat, fruit, veggies, rice, potatoes, etc... Hopefully, over time, you will begin to heal and not fell so bad. It took me quite a few months of a very bland diet to not feel sick and get my appitite back. You might look into digestive enzymes or probiotics.

Be very vigilant in eating gluten-free! Then later, start to try gluten-free processed foods, dairy, corn, etc...

2. Again, at first stick with simple gluten-free foods. I recommend not eating a lot of dairy until you fell better. I never have had a lactose problem, but I waited for several months before re-introducing cheese, etc... into my life.

3. I am hypothyroid (on synthroid) and also have lupus and several other auto-immune conditions. None of these conditions improved with a gluten-free diet! The body is a complicted piece of machinery and there are a lot of things going on. Many might say that other health issues improved on going gluten free, but I believe this is because they solved one issue and felt better in general.... just my opinion

4. Over time these 'accidental' glutenings can add up! I, personally, would never risk it.

5. In my kitchen, we are extremely clean and careful, so I don't have a separate set of cookware for myself. My wonderful husband carefully cleans everything, then puts it through the dishwasher (this includes plastics like tubberwar, etc...). I am disgusted by people being worried about gluten reisdue being stuck between the tines of a fork or in a colander. Yuk!

However, YES, you must have a separte tub of butter, peanut butter, jelly, toaster, etc... because you can't get rid of crumbs from them.

6. I try to stick to wheat/barley free lotions and shampoos, etc... sometimes I will use a shampoo or conditioner that has a wheat ingredient in it, but am really carefull not to accedentaly get any in my mouth when showering.

Welcome and Feel Better!

Pam

[tarnalberry]

Thanks for all the info. I've had a very hard time explaining to people that a miniscule crumb can do damage - everyone just laughs and says surely that isn't true. How do you get the point across to people that this is serious?! Is there a medical site or something that I can quote what you said about it taking 10-14 days again to heal, etc.?

I lost the link to the study that discussed the 'pharmokinetics' of gluten in celiacs, unfortunately. But it wasn't 'it takes 10-14 days to heal. It was "the chemical reaction that damages you takes 10-14 days to run it's course", THEN you can start to heal. Basically, you're hand is over the candleflame for that long, then the candle goes out, and the skin can start to heal from the burn, damage wise. If I find the link again, I'll post it, but the upcoming weeks are going to be kinda busy. :-)

[dionnek]

I lost the link to the study that discussed the 'pharmokinetics' of gluten in celiacs, unfortunately. But it wasn't 'it takes 10-14 days to heal. It was "the chemical reaction that damages you takes 10-14 days to run it's course", THEN you can start to heal. Basically, you're hand is over the candleflame for that long, then the candle goes out, and the skin can start to heal from the burn, damage wise. If I find the link again, I'll post it, but the upcoming weeks are going to be kinda busy. :-)

Thanks so much - this really helps. I've shown your response to a few people already and they have a new found appreciation for what I am (and will be) going through. It helps so much to hear so many people that do it successfully!