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How Can I Tell?

bartfull

By bartfull
in Coping with Celiac Disease

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bartfull Rising Star
bartfull
Posted

OK, so I know I can't have gluten. Well, I THINK gluten is probably a problem. Mom was a diagnosed Celiac, so odds are I am too. The trouble is, other than insomnia and brain fog, the only symptom I have is psoriasis.

I have discovered that corn is the big enemy of my psoriasis. I'm not sure if gluten bothers it too, but since I have been both gluten and corn free, I sleep at night, my head is clear (maybe BECAUSE I sleep at night?) and the psoriasis has cleared up.

I've been sticking to plain grilled or roasted meats, brown rice, and fresh veggies. Now that I'm feeling so much better I am ready to try adding other foods like soy, nightshades, and I'm even thinking about trying gluten too, to see if it's JUST the corn that bothers me.

But being I am asymptomatic for the most part, how in the world will I be able to tell if soy, for example, gives me problems? I don't have insurance, and to be honest, even if I did, I live in an area where there is NO good medical care unless I drive five hundred miles. So I don't have the time or the money to be tested.

How will I be able to tell?

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Marilyn R Community Regular
Marilyn R
Posted

Hi Bart,

You're feeling good enough to want to flirt with disaster, that's a good sign!

I'd go with reintroducing nightshades. That adds so many foods for you.

After everything I've read about soy, I'm pretty much in the camp that I'll never indulge in soy again unless it is fermented, and even then it doesn't really appeal to me because the substitutes for soy haven't been unappealing after some tinkering with them.

As for gluten, :ph34r: Egads, what are you thinking? Don't do it! :) You have an autoimmune disorder and 1st degree relative with it and your insomnia and brain fog have improved! Why go back there? (To the badlands.)

I'd reintroduce first nightshades, second soy, third corn. If you get through all that without enduring psoriasis, brainfog or insomnia, then try gluten.

bartfull Rising Star
bartfull
Posted
  • Author

Hi Bart,

You're feeling good enough to want to flirt with disaster, that's a good sign!

I'd go with reintroducing nightshades. That adds so many foods for you.

After everything I've read about soy, I'm pretty much in the camp that I'll never indulge in soy again unless it is fermented, and even then it doesn't really appeal to me because the substitutes for soy haven't been unappealing after some tinkering with them.

As for gluten, :ph34r: Egads, what are you thinking? Don't do it! :) You have an autoimmune disorder and 1st degree relative with it and your insomnia and brain fog have improved! Why go back there? (To the badlands.)

The thing is, I KNOW I can't have corn. I was eating just whole foods when I first started and the psoriasis cleared up completely. Then I made some gluten free cornbread, and the psoriasis came back with a vengence. I got into something with corn one other time and it made the psoriasis flare.

With no insurance, there's no way I can get tested for any intolerences, and with no other symptoms, I can't tell if I'm doing any damage to my body. I'm thinking that corn really MIGHT be the only thing that bothers me, but with no symptoms, I just can't tell.

I know that people say that after you have been on the diet for a while you become even more sensitive, so I'm almost hoping I can get some digestive symptoms so at least I'll know for sure when I have gotten into something I'm intolerent to.

I'd reintroduce first nightshades, second soy, third corn. If you get through all that without enduring psoriasis, brainfog or insomnia, then try gluten.

Marilyn R Community Regular
Marilyn R
Posted

I wish you good luck. Corn in the 4th thing I eliminated, and I haven't been brave enough to reintroduce it yet. It's a scary crop lol. (I can say that, I'm a farmer's daughter.)

mushroom Proficient
mushroom
Posted

I wish you good luck. Corn in the 4th thing I eliminated, and I haven't been brave enough to reintroduce it yet. It's a scary crop lol. (I can say that, I'm a farmer's daughter.)

Yes, corn and soy are both very scary crops for me (along with feedlot beef :ph34r: ). And I'm a farmer's daughter too - grass-grazed sheep, though :P

If you are going to start adding things back in, do it slooowly, one thing at a time for at least a week. Since you seem so ambivalent about gluten, I think I would do that first. If you are intolerant it will probably give you the biggest, quickest kick. ;)

Marilyn R Community Regular
Marilyn R
Posted

Yes, corn and soy are both very scary crops for me (along with feedlot beef :ph34r: ). And I'm a farmer's daughter too - grass-grazed sheep, though :P

If you are going to start adding things back in, do it slooowly, one thing at a time for at least a week. Since you seem so ambivalent about gluten, I think I would do that first. If you are intolerant it will probably give you the biggest, quickest kick. ;)

Good point Mushroom. Something else to think about is CC from wheat with corn products. (Corn tortillias, corn flour, grits, etc.) They're all made on shared manufacuting lines from what I've seen in the grocery stores in my small town. Maybe there are more options in big city groceries.

bartfull Rising Star
bartfull
Posted
  • Author

Speaking of big city groceries, I went to Rapid City (over 50 miles from here) last night and shopped at Safeway. I bought a lot of meats, some white cheddar (would you believe, all I can get in my town is that yucky orange-dyed stuff!), I found Kettle Brand chips at a much lower price than here in town at the healthfood store, which is the only place that carries them, and I bought some ice cream with no corn or gluten. In my town, the only gluten-free/CF ice cream is Breyer's Vanilla, which costs $7.95 for the 1.75 quart size (!!!) I'm so happy I will have something decent to eat for the next month.

Yeah, I think I'll try the gluten first. Because I know for certain that I can't have corn, I'm going to make pie crust. I can make a pork pie with it, and that'll give me three day's worth. That should be enough to tell, right? But my question is, what if I get no symptoms, but am still doing damage to my villi?

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love2travel Mentor
love2travel
Posted

Speaking of big city groceries, I went to Rapid City (over 50 miles from here) last night and shopped at Safeway. I bought a lot of meats, some white cheddar (would you believe, all I can get in my town is that yucky orange-dyed stuff!), I found Kettle Brand chips at a much lower price than here in town at the healthfood store, which is the only place that carries them, and I bought some ice cream with no corn or gluten. In my town, the only gluten-free/CF ice cream is Breyer's Vanilla, which costs $7.95 for the 1.75 quart size (!!!) I'm so happy I will have something decent to eat for the next month.

Yeah, I think I'll try the gluten first. Because I know for certain that I can't have corn, I'm going to make pie crust. I can make a pork pie with it, and that'll give me three day's worth. That should be enough to tell, right? But my question is, what if I get no symptoms, but am still doing damage to my villi?

Glad you had an awesome stock-up party! :D

When I was diagnosed I was asymptomatic (diagnosed as my sister was gluten intolerant so I requested testing) but my poor little villi were all flattened. But the good news is after being gluten-free for five months I had bloodwork again to see where I am at. My number when diagnosed was 71; now it is 3.8 (anything under 7.0 is considered negative). So, your little villli will be very happy when you go gluten free! :)

Marilyn R Community Regular
Marilyn R
Posted

Speaking of big city groceries, I went to Rapid City (over 50 miles from here) last night and shopped at Safeway. I bought a lot of meats, some white cheddar (would you believe, all I can get in my town is that yucky orange-dyed stuff!), I found Kettle Brand chips at a much lower price than here in town at the healthfood store, which is the only place that carries them, and I bought some ice cream with no corn or gluten. In my town, the only gluten-free/CF ice cream is Breyer's Vanilla, which costs $7.95 for the 1.75 quart size (!!!) I'm so happy I will have something decent to eat for the next month.

Yeah, I think I'll try the gluten first. Because I know for certain that I can't have corn, I'm going to make pie crust. I can make a pork pie with it, and that'll give me three day's worth. That should be enough to tell, right? But my question is, what if I get no symptoms, but am still doing damage to my villi?

If you have celiac disease, you will set yourself back and damage your villi. If you don't have celiac disease, as Love mentioned, you may have no notable symptoms. It's a mystery. Let us know how it goes.

What is pork pie? I'm curious because I've never heard of it and because that's what you're choosing for your gluten challenge. (My choice would be a strawberry cream cheese croissant at a french bakery, but I can't go there, even without a diagnosis.

Glad you got some good eats, let us know how it turns out.

mushroom Proficient
mushroom
Posted

Good point Mushroom. Something else to think about is CC from wheat with corn products. (Corn tortillias, corn flour, grits, etc.) They're all made on shared manufacuting lines from what I've seen in the grocery stores in my small town. Maybe there are more options in big city groceries.

You know, Marilyn, that is what muddied the waters for me for so long. I first started having problems when I was introduced to Mexican restaurants, so I was pretty sure it was the corn. But in those places you get lots of corn and lots of wheat and sometimes the two together :rolleyes: I reached the point where I always ordered prawns if forced to go to a Mexican restaurant. But then I had a food scratch test that showed positive for corn and soy, (but not wheat - haha, that's how little I knew) I didn't think anything about wheat. And I would go out and eat bread and potato chips and still have problems (of course I was not label reading at that point - one does go through degrees of food sophistication :P ) Of course I later found out I couldn't handle wheat, corn, soy or potatoes :lol: No wonder I used to have problems with snack food!!

bartfull Rising Star
bartfull
Posted
  • Author

Marilyn, pork pie is a French Canadian dish. You cook your ground pork in a frying pan until it is ALMOST done. Then you drain it and add a bit of ground clove and some allspice, and some black pepper. I usually make a small pan of mashed potatoes and stir in a heaping tablespoon - it just helps hold things together. Put it in a pie crust that you have poked a few holes in with a fork. Then put a top crust on and slice some vents in it. Cook it at about 425* for an hour and twenty minutes.

I've been told it's an acquired taste, but I loved it the first time I tasted it. It is usually served around the holidays, often for breakfast. I could eat it any time of the day night or year. Have a slice of sharp cheddar on the side and you have a bit of culinary heaven!

love2travel Mentor
love2travel
Posted

Marilyn, pork pie is a French Canadian dish. You cook your ground pork in a frying pan until it is ALMOST done. Then you drain it and add a bit of ground clove and some allspice, and some black pepper. I usually make a small pan of mashed potatoes and stir in a heaping tablespoon - it just helps hold things together. Put it in a pie crust that you have poked a few holes in with a fork. Then put a top crust on and slice some vents in it. Cook it at about 425* for an hour and twenty minutes.

I've been told it's an acquired taste, but I loved it the first time I tasted it. It is usually served around the holidays, often for breakfast. I could eat it any time of the day night or year. Have a slice of sharp cheddar on the side and you have a bit of culinary heaven!

This is called Tourtiere and I love it! I add a bit of freshly-grated nutmeg instead of cloves but that is just a personal taste preference.

Marilyn R Community Regular
Marilyn R
Posted

You know, Marilyn, that is what muddied the waters for me for so long. I first started having problems when I was introduced to Mexican restaurants, so I was pretty sure it was the corn. But in those places you get lots of corn and lots of wheat and sometimes the two together :rolleyes: I reached the point where I always ordered prawns if forced to go to a Mexican restaurant. But then I had a food scratch test that showed positive for corn and soy, (but not wheat - haha, that's how little I knew) I didn't think anything about wheat. And I would go out and eat bread and potato chips and still have problems (of course I was not label reading at that point - one does go through degrees of food sophistication :P ) Of course I later found out I couldn't handle wheat, corn, soy or potatoes :lol: No wonder I used to have problems with snack food!!

Thanks, Mushroom, you are a well respected member on the forum. Do you still recommend she challenge gluten before the other avoided foods? I'm just curious.

mushroom Proficient
mushroom
Posted

Well, the reason I suggested getting gluten out of the way first is that I have a sneaking suspicion that the reaction will be pretty clear cut and remove the gluten doubt right away. Then the other things can be tested. Bartfull does seem to doubt the gluten connection despite the family history and if the brain fog returns immediately that doubting should vanish. Gluten is such a biggie and such an important one to reject if it bothers you. That was my thinking. It should not be one about which you have ambivalence :rolleyes:

bartfull Rising Star
bartfull
Posted
  • Author

I think it's probably just wishful thinking. The corn is a much bigger problem because none of the big companies care about corn the way some of them now care about gluten. So they don't even list all of the things that might be made with corn. For example, many frozen fruits and vegetables are dusted with corn starch to keep them from clumping together when frozen. Baby carrots in the bag are dusted with cornstarch. Most ice creams are sweetened with that damnable high fructose corn syrup. All of the good gluten free breads have cornstarch. It's just everywhere.

I would much rather have to give up gluten than corn, but seeing I already know I can't have corn, I was just HOPING maybe that was my only problem. I'll find out soon though, as soon as I build up my courage. And I really and truly DO hope that if gluten is a problem for me, that I have definite digestive symptoms. I'd rather be sick for a few days than to not get sick but still continue doing damage to my body.

I think I'm going to have to wait a month or so to do my experimenting. Right now, things are busy in my shp so I'm open seven days a week. Come October, I'll start taking Sundays off again, so I can eat some gluten on a Saturday afternoon, then see what happens...

Marilyn R Community Regular
Marilyn R
Posted

Well, the reason I suggested getting gluten out of the way first is that I have a sneaking suspicion that the reaction will be pretty clear cut and remove the gluten doubt right away. Then the other things can be tested. Bartfull does seem to doubt the gluten connection despite the family history and if the brain fog returns immediately that doubting should vanish. Gluten is such a biggie and such an important one to reject if it bothers you. That was my thinking. It should not be one about which you have ambivalence :rolleyes:

Ok. I appreciate your posts (always) and slso appreciate the logical, succinct answer to my question. I understand now. :)

Marilyn R Community Regular
Marilyn R
Posted

I think it's probably just wishful thinking. The corn is a much bigger problem because none of the big companies care about corn the way some of them now care about gluten. So they don't even list all of the things that might be made with corn. For example, many frozen fruits and vegetables are dusted with corn starch to keep them from clumping together when frozen. Baby carrots in the bag are dusted with cornstarch. Most ice creams are sweetened with that damnable high fructose corn syrup. All of the good gluten free breads have cornstarch. It's just everywhere.

I would much rather have to give up gluten than corn, but seeing I already know I can't have corn, I was just HOPING maybe that was my only problem. I'll find out soon though, as soon as I build up my courage. And I really and truly DO hope that if gluten is a problem for me, that I have definite digestive symptoms. I'd rather be sick for a few days than to not get sick but still continue doing damage to my body.

I think I'm going to have to wait a month or so to do my experimenting. Right now, things are busy in my shp so I'm open seven days a week. Come October, I'll start taking Sundays off again, so I can eat some gluten on a Saturday afternoon, then see what happens...

Corn is a biggy, I get ticked off at the grocery when I'm staring at those labels and see high fructose corn syrup and corn starch. It's even more of a pia when you look at ingredients for health & beauty products. Arrggh! Glad your store is busy, let us know how your challenge goes, wish you well...

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
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