New Celiac - Help!

[Karrin]

I was just told by an immunologist, roughly 2 weeks now, that my blood was positive for celiacs. I could use some advice, as my follow up with the gastro doctor was completely unhelpful - thank god for the internet or I'd be completely lost. I immediately started the diet that same day and did my best to rid my house of any offending items and up until last Sunday I was feeling absolutely amazing! I'm not sure what happened to trigger this, perhaps I was cross contaminated at my grandmother's. I ate some Cook's ham (seasoned only with cloves) and dipped into her sugar container for my blueberries, which later I realized had probably been used for baking at some time. I've felt wretched all week and I'm beginning to wonder if this diagnosis was correct after all. I've been eating nothing but gluten free grocery items and fresh fruit/veggies. I tossed my old lotion, and I'm pretty sure the toothpaste and shampoo/conditioner I'm using is safe. Any suggestions? I use Tresemme shampoo/cond, colgate, and st ives face scrub.

I'm feeling pretty low right now and unnerved after searching for so long for this answer and, now, being paranoid it isn't right, or not working. My gastro doctor was of no help, he didn't think one of my antibody levels were high enough for this to be 'it', even though I told him how great I was doing. Honestly, if this isn't 'it' I don't know how I'll manage. After feeling so crummy for so long I'm at the end of my rope. Right now the skin around my stomach feels ready to tear my stomach is so inflated, I'm exhausted, cranky and can't think clearly and my lower right back feels like it has an elephant dancing on top of it. I've also got reynauld's (a circulation problem that restricts blood flow to your extremities, making them very cold) and the joint pain in my fingers is all back as are the little red bumps on both sides of my face. How long does this usually last - or do symptoms sometimes spontaneously return in the beginning? I feel like it should be going away as quickly as it did the week I started, relief was immediate then. Everytime I eat now, even just fruit I get extremely ill, but I have a gnawing feel in my stomach + nausea that only goes away after I eat something (at least for a few minutes).

Also, any advice on diet and what tests/ follow up I should be doing with my doctors? I know I've been tested for vitamin d deficiencies before, and they are normal (I'm a milk freak). I've noticed my bones kind of 'crack' in places they never used to when I move around. I opted not to do the biopsie - my husband and I are simply too broke from paying off my medical bills and I've been all but bedridden for the last five years and unable to work. Are there benefits to having it, other than a medical diagnosis?

Thanks everyone.

[The Fluffy Assassin]

I was just told by an immunologist, roughly 2 weeks now, that my blood was positive for celiacs. I could use some advice, as my follow up with the gastro doctor was completely unhelpful - thank god for the internet or I'd be completely lost. I immediately started the diet that same day and did my best to rid my house of any offending items and up until last Sunday I was feeling absolutely amazing! I'm not sure what happened to trigger this, perhaps I was cross contaminated at my grandmother's. I ate some Cook's ham (seasoned only with cloves) and dipped into her sugar container for my blueberries, which later I realized had probably been used for baking at some time. I've felt wretched all week and I'm beginning to wonder if this diagnosis was correct after all. I've been eating nothing but gluten free grocery items and fresh fruit/veggies. I tossed my old lotion, and I'm pretty sure the toothpaste and shampoo/conditioner I'm using is safe. Any suggestions? I use Tresemme shampoo/cond, colgate, and st ives face scrub.

I'm feeling pretty low right now and unnerved after searching for so long for this answer and, now, being paranoid it isn't right, or not working. My gastro doctor was of no help, he didn't think one of my antibody levels were high enough for this to be 'it', even though I told him how great I was doing. Honestly, if this isn't 'it' I don't know how I'll manage. After feeling so crummy for so long I'm at the end of my rope. Right now the skin around my stomach feels ready to tear my stomach is so inflated, I'm exhausted, cranky and can't think clearly and my lower right back feels like it has an elephant dancing on top of it. I've also got reynauld's (a circulation problem that restricts blood flow to your extremities, making them very cold) and the joint pain in my fingers is all back as are the little red bumps on both sides of my face. How long does this usually last - or do symptoms sometimes spontaneously return in the beginning? I feel like it should be going away as quickly as it did the week I started, relief was immediate then. Everytime I eat now, even just fruit I get extremely ill, but I have a gnawing feel in my stomach + nausea that only goes away after I eat something (at least for a few minutes).

Also, any advice on diet and what tests/ follow up I should be doing with my doctors? I know I've been tested for vitamin d deficiencies before, and they are normal (I'm a milk freak). I've noticed my bones kind of 'crack' in places they never used to when I move around. I opted not to do the biopsie - my husband and I are simply too broke from paying off my medical bills and I've been all but bedridden for the last five years and unable to work. Are there benefits to having it, other than a medical diagnosis?

Thanks everyone.

It sounds like your first guess, that the sugar at your grandmother's house was cross-contaminated, is probably correct. If so, you should be feeling better again in a very few days. If you aren't, you'll need to look at other possible food sensitivities or intolerances or allergies. If you can possibly afford a visit to an allergist, that might be a useful idea.

I haven't been diagnosed officially; I can't see the point of going back on gluten just for the privilege. If you feel it would help you stick to the diet, or if it would somehow help with disability payments, then I could see seeking an official diagnosis. Otherwise, you're probably better just sticking to the diet.

Good luck to you, and welcome to the tribe.

[miloandotis]

HI, I'm brand new too. I'm wondering if you have other food allergies as well. I know that is my problem. I'm on day three of my new diet. Rice cakes with peanut butter and banana is already getting boring...UGHHHHH

Hang in there...it looks like we found some support here.

[ang1e0251]

Welcome to the forum. We're glad you are here.

A glutening can take days for some to recover from. Are you taking sublingual B12? It helps me some when I've eaten something I shouldn't. Could have been the sugar but I find I don't react that well to ham either.

You will feel better soon. Just make sure you're not getting contaminated at home. There could be some sneaky gluten in something you use every day. What are you eating or using now that you weren't that first week? Are you on dairy? Lots of us find that a no no in the beginning. You can add it back in later after you've healed a bit.

Are you cooking in a container that might still hold gluten? You need to clean your pots and pans especially well and toss any that are very damaged. Are you seasoning with something that might contain gluten? Check all the spice labels in your cabinate. Check your soy sauce, balsamic vinegar based salad dressing even some nuts have wheat added.

Because you already felt well, I would think that your diagnosis is right on expecially with positive blood work. Look for sneaky gluten or another food sensitivity.

[Takala]

St Ives facial scrub may not be gluten free, call the manufacturer and check. Lactose intolerance goes hand in hand with gluten intolerance, and may or may not resolve in time. Try avoiding lactose by eating dairy products such as yogurt or hard cheeses, or try going off dairy entirely and seeing if that helps.

Go back to very basic foods and add in one at a time and see what happens.

Buy a new toaster and a new colander. New baking pans. Ditch the old teflon.

Don't let fellow householders mess up your stuff.

Pet foods - your house pet can go gluten free too, especially if it licks you a lot.

It's almost impossible to have a gluten household cook for you and not get contaminated.

Check medications, over the counter and prescription, if any.

Take a B vitamin complex, calcium with D vit, magnesium, to make up for all the problems you have not absorbing nutrients.

Some pre baked gluten free items just are not going to agree with you, in general, a lower grain carbohydrate, higher fat and protein diet with a lot of vegetables, compared to people who eat a typical gluten filled diet, is the way to go.

It will take a while to get yourself re tuned, don't give up.

[linda7276]

HI, I'm brand new too. I'm wondering if you have other food allergies as well. I know that is my problem. I'm on day three of my new diet. Rice cakes with peanut butter and banana is already getting boring...UGHHHHH

Hang in there...it looks like we found some support here.

Most all nuts are cross contaminated because they are manufactured on lines where wheat is processed, and you cannot trust the label to tell you that, though some will.

I would love to hear from someone who can tell me about nuts that are not cross contaminated, including peanuts, and peanut butter.

I ordered bunches of nuts ($120.00 worth) from an online source nutsonline.com....and omg I got sick sick sick from the pumpkin seeds because of cross contamination. It was frustrating because I knew I was being glutened but couldn't figure it out. I emailed them and they responded that their nuts are processed with gluten. Since then I went to many sites selling nuts and got the same response, so if anyone can tell me about a source for gluten free nuts I would be delighted. I know the nuts in the shell are safe...or should be...

[Takala]

Arrowhead Mills makes peanut butter that is labeled gluten free on the jar. You have to stir it up and keep it in the refrigerator once opened.

I use raw nuts, otherwise, I don't trust anybody to process the things. I live in a big almond and walnut growing area and buy the raw ones in big bags. Ditto sunflower seeds, I only use raw ones that are pre packaged that I get from Whole Foods, so far so good. I've gotten nailed too many times from things fried in sunflower oil, which must have been done on lines that had other contaminants.

[Karrin]

It sounds like your first guess, that the sugar at your grandmother's house was cross-contaminated, is probably correct. If so, you should be feeling better again in a very few days. If you aren't, you'll need to look at other possible food sensitivities or intolerances or allergies. If you can possibly afford a visit to an allergist, that might be a useful idea.

I haven't been diagnosed officially; I can't see the point of going back on gluten just for the privilege. If you feel it would help you stick to the diet, or if it would somehow help with disability payments, then I could see seeking an official diagnosis. Otherwise, you're probably better just sticking to the diet.

Good luck to you, and welcome to the tribe.

Thanks!

I couldn't see the point of going back on it either. I've had diagnostic surgeries before (two for endometriosis) and I know how surgeons don't always do the best job or are they always 100% accurate at finding things. I'd rather not waste another few thousand on a maybe. Unfortunately, since I've been unable to work for so long- about four years- I'm not even eligible for disability benefits, so I'm really praying this diet works for me. As far as sticking to it, the only hard part is eating out - which I've decided to just eliminate after a suspicious drink I ordered the other day. I was always more of a veggie/fruit gal anyhoo.

I think if things continue as they are I might have to look into that allergist. So far, my troubles continue. I ate corn on the cob the other night and had bad cramping almost immediately afterward - is it possible to have a celiac like condition with corn? Ugh!

[Karrin]

Welcome to the forum. We're glad you are here.

A glutening can take days for some to recover from. Are you taking sublingual B12? It helps me some when I've eaten something I shouldn't. Could have been the sugar but I find I don't react that well to ham either.

You will feel better soon. Just make sure you're not getting contaminated at home. There could be some sneaky gluten in something you use every day. What are you eating or using now that you weren't that first week? Are you on dairy? Lots of us find that a no no in the beginning. You can add it back in later after you've healed a bit.

Are you cooking in a container that might still hold gluten? You need to clean your pots and pans especially well and toss any that are very damaged. Are you seasoning with something that might contain gluten? Check all the spice labels in your cabinate. Check your soy sauce, balsamic vinegar based salad dressing even some nuts have wheat added.

Because you already felt well, I would think that your diagnosis is right on expecially with positive blood work. Look for sneaky gluten or another food sensitivity.

The frustrating thing is, I don't see how my diet has differed this week in comparision to the week and a half before it. It's Saturday and my symptoms have yet to alleviate (my poor husband takes my fluctuating moods so well, poor thing). I haven't had any trouble with milk, never any d after drinking it and I had that all my first week without any ill effect. I did have a LOT of blueberries and milk that first week and the gluten free corn chex. Could it be causing all the celiac symptoms now? As far as spices/salad dressings etc, I've bought my own sugar and gluten free salad dressings. I've been using a somewhat 'newer; frying pan to cook my meals (now my pan only). I did use some dishwasher cleaned plastic containers though, so maybe that contributed to my current state - ugh.

This week not much has changed in my diet, except the possible cc at my grandmother's with the sugar dish/ham and Thursday (my symptoms were still there) I stopped with my cousin at this drink stand, where they make bubble tea. I asked what went into it and it was fresh mango, sugar, ice and milk (I ordered without the tapioca balls to be safe) but not even 3 minutes into sipping it my bowels began to cramp. No more bubble tea for me, or going out for that matter. I feel like the bubble boy.

Thanks for the suggestion of B12, I will look into it. Can it be found in the regular vitamin aisle?

[Karrin]

St Ives facial scrub may not be gluten free, call the manufacturer and check. Lactose intolerance goes hand in hand with gluten intolerance, and may or may not resolve in time. Try avoiding lactose by eating dairy products such as yogurt or hard cheeses, or try going off dairy entirely and seeing if that helps.

Go back to very basic foods and add in one at a time and see what happens.

Buy a new toaster and a new colander. New baking pans. Ditch the old teflon.

Don't let fellow householders mess up your stuff.

Pet foods - your house pet can go gluten free too, especially if it licks you a lot.

It's almost impossible to have a gluten household cook for you and not get contaminated.

Check medications, over the counter and prescription, if any.

Take a B vitamin complex, calcium with D vit, magnesium, to make up for all the problems you have not absorbing nutrients.

Some pre baked gluten free items just are not going to agree with you, in general, a lower grain carbohydrate, higher fat and protein diet with a lot of vegetables, compared to people who eat a typical gluten filled diet, is the way to go.

It will take a while to get yourself re tuned, don't give up.

Thanks, I'll check into the st ives! And I'd never have thought of the pet food! I have cats and a dog, none are lickers, but I am in charge of their feedings, so I'm handling their food twice a day and it is a dry food. I was mostly away from home my first week on the diet and had no animals to feed. I'll have to try having my husband take over a few days and see if it helps! I'll have to go vitamin shopping and lay off the gluten free rice bread. I've been eating a bit more of that this week. Are the soups any better as far as the pre-made things go or just the bakery type items like bread? I have organic/gluten free tomato soup that I've been guzzling.

[The Fluffy Assassin]

Thanks!

I couldn't see the point of going back on it either. I've had diagnostic surgeries before (two for endometriosis) and I know how surgeons don't always do the best job or are they always 100% accurate at finding things. I'd rather not waste another few thousand on a maybe. Unfortunately, since I've been unable to work for so long- about four years- I'm not even eligible for disability benefits, so I'm really praying this diet works for me. As far as sticking to it, the only hard part is eating out - which I've decided to just eliminate after a suspicious drink I ordered the other day. I was always more of a veggie/fruit gal anyhoo.

I think if things continue as they are I might have to look into that allergist. So far, my troubles continue. I ate corn on the cob the other night and had bad cramping almost immediately afterward - is it possible to have a celiac like condition with corn? Ugh!

Some people think that corn can cause celiac-like damage to the intestine; I'm not sure. I have similar worries, because I have continuing symptoms (fortunately mild, but then so are my celiac symptoms) and am worried that I may have to eliminate corn. There's a forum towards the bottom of the home page called Other Food Intolerance and Leaky Gut Issues where such things are discussed. I'm not totally convinced of the reliability of some of the information there, but it's a start. You might find some suggestions for elimination diets there, though. (The SCD, however, worries me.)

[linda7276]

Thanks!

I think if things continue as they are I might have to look into that allergist. So far, my troubles continue. I ate corn on the cob the other night and had bad cramping almost immediately afterward - is it possible to have a celiac like condition with corn? Ugh!

Yes! Corn can do the same thing as gluten, here is an article that might help. This guy is a veterinarian, and also a lactose/celiac sufferer and writes about the "four horses" gluten, soy, corn and dairy. He uses a lot of words, I personally find him very interesting, but you might want to skim down through some of the sauce and get to the meat of it....

<a href="Open Original Shared Link Advertisement/id23.html" target="external ugc nofollow">Open Original Shared Link Advertisement/id23.html</a>

Here are a couple of paragraphs from the article:

"The fantastic news is that sooooo much starts going right once the big four are avoided completely and for a long enough time. By avoiding the casein, gluten, soy, and corn, the gut starts to heal and the malabsorption syndrome begins to reverse. How long does it take for the intestine to heal once the offending foods are withdrawn? Well, according to the celiac literature, it takes anywhere from 6 months to 2 years for the intestinal villi to return to normal. Does that make sense? Not to me, unless you consider the fact that gluten is not the only thing doing the harm to those villi. This was my first quest, to get on celiac forums and make sure they knew the truth about casein, soy, and corn. I hated reading about celiacs that had struggled so valiantly to be gluten-free only to find that they were shooting themselves in the foot big time by the continued consumption of the other three culprits. Statistically, celiacs have a 50% chance of also being casein intolerant. I have to believe that it is much more common than that. But soy and corn are looming larger and larger as we fall for the myth that soy is a health food, we turn to vegetarianism for various reasons, and we continue to genetically modify corn to death.

Assuming that we do enough right, the gut does heal and probably much more quickly than we currently believe. After all, it is one of the fastest healing tissues in the body. Once healed, it starts to take in all of the calcium, iron, iodine, B complex, vitamin C, and trace minerals that it has been starving for over the past years, often from the moment the individual started consuming the big four. The thyroid becomes healthy, the iron deficiency resolves, enzyme systems start operating at peak efficiency, tissue repairs, and the immune system gets back to normal. And that last item is critical. That's when many of the long-term symptoms finally resolve- the allergies, GI signs, skin problems, and in the best case scenario, the immune-mediated diseases. I would love to think that the risk of cancer then plummets, as well. What couldn't our immune system accomplish if it were in optimal condition? I can no longer put limitations of what our body is capable of doing in the way of healing or prevention when I think about that last statement. However, I know that our environment- with its staggering levels of serious pollution- is a huge limiting factor. I would love to dive into that topic but time constraints do prevent that."

His article is the reason I decided to give up Cow's milk/cheese, etc. And when I did all my bone/joint pain went away, not only that but I had this terrible heat in my body that would wake me up at night, I've had it since I can remember, and it's completely gone too.

And getting back to corn. I stopped all corn except popcorn, and have only had it twice in the last month, both times I've gained 2 pounds after eating it, so that tells me I am retaining fluid...I had some yesterday and I also notice some tingling in my left lower leg.

The thing is...until we remove ALL offending foods, we won't completely heal. So I am stopping the popcorn now too. Once we heal we may be able to resume some of the foods, but I think once you're gluten intolerant/Celiac, there is no returning to gluten. I hope some of you will read the article and let me know what you think. I am always open to hearing what others have to say, and learning as much about this as I can...

[linda7276]

Arrowhead Mills makes peanut butter that is labeled gluten free on the jar. You have to stir it up and keep it in the refrigerator once opened.

I use raw nuts, otherwise, I don't trust anybody to process the things. I live in a big almond and walnut growing area and buy the raw ones in big bags. Ditto sunflower seeds, I only use raw ones that are pre packaged that I get from Whole Foods, so far so good. I've gotten nailed too many times from things fried in sunflower oil, which must have been done on lines that had other contaminants.

Thanks Takala, I'll check that out.... The nuts I got from nutsonline.com, were raw and they were cross contaminated with gluten...I'm not sure why that happens, except they wind up on the same lines with wheat...maybe for packaging...anyway...

[ang1e0251]

The sublingual B12 is the methyl kind. I find this online or at my local health food store. Walmart carries the other kind but we need the methyl kind that hits the digestion where we need it. It's a big help to me.

[Ariauna]

Some pre baked gluten free items just are not going to agree with you.

You may have noticed I posted on Saturday night as I was dealing with a contamination and couldn't figure out what it was I ate. After about 36 hours of cc I am able to start back on my normal diet with a little help from meds too. I am wondering though why is it that pre baked gluten-free items won't agree with me? This may answer my question as to what set me off because I ate Kinninnik chocolate sandwich cookies and that was the only thing different I did that night and within 2 hours of eating them I was toasted!! I did mention in my other post that these cookies are labeled gluten-free, egg, casein, dairy free yet if you look on the back it has a warning about equipment processing eggs... I am allergic to egg as well.

Could you please explain this thought?

To original poster:

I remember how overwhelmed I felt as I started trying to go gluten-free and realized just how complicated it was. I began slowly with things marked gluten-free and then gradually added other things in by reading labels. It will get easier and you will within a couple months be able to build up a variety of choices back into your diet. Just don't give up because once you spend a few weeks without feeling all the bad effects of being contaminated you will never want to feel sick again. Keeping a written food log is very important so you can track what you react good and bad too it helps in eliminating things that may not agree with you.

Good luck

[Karrin]

Some people think that corn can cause celiac-like damage to the intestine; I'm not sure. I have similar worries, because I have continuing symptoms (fortunately mild, but then so are my celiac symptoms) and am worried that I may have to eliminate corn. There's a forum towards the bottom of the home page called Other Food Intolerance and Leaky Gut Issues where such things are discussed. I'm not totally convinced of the reliability of some of the information there, but it's a start. You might find some suggestions for elimination diets there, though. (The SCD, however, worries me.)

Ugh, I do hope corn isn't on my list! I love popcorn and it is one of the few snack foods I actually would miss.

Thanks, I'll take a look (with a skeptical eye of course).

[Karrin]

Yes! Corn can do the same thing as gluten, here is an article that might help. This guy is a veterinarian, and also a lactose/celiac sufferer and writes about the "four horses" gluten, soy, corn and dairy. He uses a lot of words, I personally find him very interesting, but you might want to skim down through some of the sauce and get to the meat of it....

<a href="Open Original Shared Link Advertisement/id23.html" target="external ugc nofollow">Open Original Shared Link Advertisement/id23.html</a>

Here are a couple of paragraphs from the article:

"The fantastic news is that sooooo much starts going right once the big four are avoided completely and for a long enough time. By avoiding the casein, gluten, soy, and corn, the gut starts to heal and the malabsorption syndrome begins to reverse. How long does it take for the intestine to heal once the offending foods are withdrawn? Well, according to the celiac literature, it takes anywhere from 6 months to 2 years for the intestinal villi to return to normal. Does that make sense? Not to me, unless you consider the fact that gluten is not the only thing doing the harm to those villi. This was my first quest, to get on celiac forums and make sure they knew the truth about casein, soy, and corn. I hated reading about celiacs that had struggled so valiantly to be gluten-free only to find that they were shooting themselves in the foot big time by the continued consumption of the other three culprits. Statistically, celiacs have a 50% chance of also being casein intolerant. I have to believe that it is much more common than that. But soy and corn are looming larger and larger as we fall for the myth that soy is a health food, we turn to vegetarianism for various reasons, and we continue to genetically modify corn to death.

Assuming that we do enough right, the gut does heal and probably much more quickly than we currently believe. After all, it is one of the fastest healing tissues in the body. Once healed, it starts to take in all of the calcium, iron, iodine, B complex, vitamin C, and trace minerals that it has been starving for over the past years, often from the moment the individual started consuming the big four. The thyroid becomes healthy, the iron deficiency resolves, enzyme systems start operating at peak efficiency, tissue repairs, and the immune system gets back to normal. And that last item is critical. That's when many of the long-term symptoms finally resolve- the allergies, GI signs, skin problems, and in the best case scenario, the immune-mediated diseases. I would love to think that the risk of cancer then plummets, as well. What couldn't our immune system accomplish if it were in optimal condition? I can no longer put limitations of what our body is capable of doing in the way of healing or prevention when I think about that last statement. However, I know that our environment- with its staggering levels of serious pollution- is a huge limiting factor. I would love to dive into that topic but time constraints do prevent that."

His article is the reason I decided to give up Cow's milk/cheese, etc. And when I did all my bone/joint pain went away, not only that but I had this terrible heat in my body that would wake me up at night, I've had it since I can remember, and it's completely gone too.

And getting back to corn. I stopped all corn except popcorn, and have only had it twice in the last month, both times I've gained 2 pounds after eating it, so that tells me I am retaining fluid...I had some yesterday and I also notice some tingling in my left lower leg.

The thing is...until we remove ALL offending foods, we won't completely heal. So I am stopping the popcorn now too. Once we heal we may be able to resume some of the foods, but I think once you're gluten intolerant/Celiac, there is no returning to gluten. I hope some of you will read the article and let me know what you think. I am always open to hearing what others have to say, and learning as much about this as I can...

It definitely seems a theory worth looking in to, especially if you and others have experienced relief. And if our bodies react to one grain, why not others? I'll have to give it a try and see if my symptoms alleviate, though I pray for me it isn't all - or at least dairy, I can't imagine what I'd eat without dairy and the others cut out. It's hard enough finding meals as it is.