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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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Maryw88

Has Anyone Healed Some Of Their Intolerances?

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Hi everyone,

 

I've been strictly gluten free for about 1 year.  I do not have diagnosed celiac disease but I know I was very sick before I cut it out.  When I went gluten free I noticed I felt much better but about 3 months in noticed a soy intolerance.  Then came lactose then casein and most recently chicken, potato, Certified gluten-free oats, quinoa and corn.  Corn has been the bane of my existence.  I can not tolerate even distilled white vinegar (derived from corn). 

 

That said, I feel so much better.  Normal and healthy most of the time.  I am shocked and amazed by how healthy and happy I feel after having years of debilitating migraines, IBS, and neuropathy.  These foods gone, I feel great!

 

So, I am by no means complaining but seriously....did anyone ever get their foods back? Obviously gluten is NEVER reintroduced.  But I do miss potato.  I miss soy (tamari please!).  I realllllly miss cheese!  I know one year is not that long for healing but I have to ask, have you been able to reintroduce your intolerances?  How long did it take for you?  Also, for those of you with other grain intolerances, ever reintroduce those? 

 

I am really curious as to other grain intolerances like corn.  Would be nice not to worry about salt (iodized table salt has corn as a binding agent). 

 

Thanks everyone! 

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Yes I have heard of it. Sometimes the gut just needs a break and after a few years people get things back. Do you take probiotics? They're suppose to help as well. I'm going to try taking some soon myself. Never have had any before and wasn't a yogurt fan. We'll see how it goes.

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I lost soy, corn, potatoes, and salicylates. So far I have gotten potatoes and other nightshades back, I got corn STARCH back (but not any other form of corn), can now eat salicylates if I go easy, and as for soy, I have no interest in even trying it. (It's really not good for me so why try? Not only does is mimic hormones, but almost all soy is now GMO.)

 

It was about a year and 1/2 to get the corn starch back, and almost two years before I got potatoes back. Hang in there and keep trying occasionally. One day you might find one of your old poisons is no longer poison to you. But if you DO get something back, try not to overdo it or you may lose it again. And if you get accidentally glutened, I would avoid all of these other trouble foods for a while. After a glutening I lost the corn starch I had gotten back. I think I could eat it again now but haven't bothered trying it yet.

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Yes as my gut heals I have been able to successfully reintroduce some foods.

 

Eggs( hallelujah :D ) most nightshades ( except potatoes & eggplant all though limited amounts of potato starch is ok ) , rice , legumes ( except peanuts ) , nuts ,most fruits  ( although I need to watch bananas still )and most vegetables (trialing cauliflower soon) are on the success list .

 

Corn,potatoes,peanuts,soy,oats (actually all grains except rice)  chicken ( and of course gluten ) are still off limits for me .

This looks to be a permanent list ( with the possible exception  of chicken I have not tried to reintroduce it  )

 

 

Oh and coffee how could I forget coffee :wub:  was a successful  reintroduction  .

I am sure there are other foods I forgot to list but you get the idea B)

Edited by a1956chill

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Yes -- not many yet -- but I can do a small amount of rice or corn with no ill effect -- too much and I do have issue.  I firmly believe I'll get many foods back....currently growing heirloom tomatoes for my next challenge :)

 

PS...a very wise woman whom did get some foods back once told me the most important part of re-gaining foods -- trial with a small amount...don't overdo...I found this to be very true --- tried beans a few months back, did not have my previous reaction to them so ate more as they tasted so darn good...second day of beans was a huge mistake....when you trial wait a full three days after the first serving to make sure there are no delayed reactions or your trial will be a muddied.

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I had been unable to have dairy for years before diagnosis.  After about a year I tried some cheese and was able to tolerate it.  These days I can have about 3 glasses of milk a day.  (It's from grass fed).

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Reason for the food allergies is impaired intestinal barrier (leaky gut). You heal it by avoiding gluten and alcohol , vegetable oils, coffee permanently and the foods that you react to temporarily. Also vitamin D level (from suntanning preferably), increase saturated fat intake, google Paleo diet or even better Autoimmune paleo diet. If done right takes 4-8 months. 

 

This way I healed my intestines to the extent that i can eat fructose and dairy daily, and I  no longer have the reaction I used to have.

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Reason for the food allergies is impaired intestinal barrier (leaky gut). You heal it by avoiding gluten and alcohol , vegetable oils, coffee permanently and the foods that you react to temporarily. Also vitamin D level (from suntanning preferably), increase saturated fat intake, google Paleo diet or even better Autoimmune paleo diet. If done right takes 4-8 months. 

 

This way I healed my intestines to the extent that i can eat fructose and dairy daily, and I  no longer have the reaction I used to have.

I assume you will provide us with reliable sources, per forum rules, to support this?

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Yes, but I was warned by the Dr. not to eat the dairy.  And I didn't for a long time.  But I got annoyed because daughter outgrew some of her intolerances and those foods don't make her sick.  So I began eating dairy again.  And I was fine for a while.  But then I wasn't fine and then there was denial.  I got tested again and dairy is out.  If you do find that you have outgrown the allergies, I would advise you to eat those foods infrequently if at all.

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I haven't technically regained my lost foods but the reaction I get from them has halved, maybe even less than half at the moment. Basically I follow the usual theory. Don't do grains, vegetable oils, nightshades and go very heavy on the vitmain D and B12. That's what works

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Forgot from my earlier post -- I did get Almonds back last Fall :D

 

Still can't do any other nut or seed -- but Almonds are great...I snack on them grind them for flour and grind them more for almond butter.

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I stayed off of my "additional intolerances" for a period of 5 years. I got used to eating that way, but at about that 5 year mark (I've been gluten-free for 8 years), I was curious.

I had been completely off tapioca, coconut, soy, dairy, legumes, corn, citrus and gluten including oats.

After those 5 years, I am able to comfortably eat tapioca, dairy, corn, citrus and legumes.

I'm thinking the soy and coconut are permanent for me, but I now have incredible variety in my diet.

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 go very heavy on the vitmain D and B12. That's what works

Why do you think a lot of B12 would help? 

People can overdose on vitamin D.  Last I heard if you take more than 2000 IU per day, it's recommended you get regular blood level tests of vitamin D.  An overdose can cause serious problems. 

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I stayed off of my "additional intolerances" for a period of 5 years. I got used to eating that way, but at about that 5 year mark (I've been gluten-free for 8 years), I was curious.

I had been completely off tapioca, coconut, soy, dairy, legumes, corn, citrus and gluten including oats.

After those 5 years, I am able to comfortably eat tapioca, dairy, corn, citrus and legumes.

I'm thinking the soy and coconut are permanent for me, but I now have incredible variety in my diet.

 

:D  :D  :D  :D  :D  :wub:   :D  :D  :D  :D  :D

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Why do you think a lot of B12 would help? 

People can overdose on vitamin D.  Last I heard if you take more than 2000 IU per day, it's recommended you get regular blood level tests of vitamin D.  An overdose can cause serious problems. 

 

I was very deficient in B12 after gluten nearly killed me for 20 years so I soon came to be able to feel when I was getting low in B12 and when I wasn't. I need a B12 level of over 1000 to feel "right" so I get regular injections to keep it above 1000. Vitamin D is much more important again, you need it to keep your DNA good without errors, Because I have a fair bit of malabsorption I need to take about 4000 iu a day to hold steady and that's including sun bathing, that's to hold me over the 100 minimum blood level, I would prefer to hold it just over 150 but that starts to make it difficult and would need regular testing to make sure I didn't get too high. I had to take 4000 IU a day every day plus lay in the sun half the day for a full year just to reach 100 on my blood test.... Most of my friends who aren't even sick take 5000 IU per day and it hasn't done them any harm. I live in a cloudy and wet climate and most the people here are very deficient in vitamin D so these days most people are on Vit D supplements, it turned out low vitamin D levels were causing the local people to be depressed, so now the doctors test everyone.

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Why do you think a lot of B12 would help? 

People can overdose on vitamin D.  Last I heard if you take more than 2000 IU per day, it's recommended you get regular blood level tests of vitamin D.  An overdose can cause serious problems. 

I take a prescription dose of vit D ( 50,000 iu cap) once a week and 5000iu daily and my vit D level  just makes the scale ,. My levels are checked every three months.

I also take mega doses of vit b 12 .

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I also started with the 50,000 IU capsules ! :), we just kept upping the dose until it started to soak in, I was doing one a week for a very long time. I think the regular ones I take now absorb a bit better though, so I take 4x1000

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:D:D:D:D:D:wub::D:D:D:D:D

Thanks Lisa :)

Takes some of us longer than others-- but there is light at the end of the tunnel ;)

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I also started with the 50,000 IU capsules ! :), we just kept upping the dose until it started to soak in, I was doing one a week for a very long time. I think the regular ones I take now absorb a bit better though, so I take 4x1000

But why would it help, other than preventing a deficiency?  It sounds like you have malabsorption issues. 

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I also started with the 50,000 IU capsules ! :), we just kept upping the dose until it started to soak in, I was doing one a week for a very long time. I think the regular ones I take now absorb a bit better though, so I take 4x1000

 

that's where i am at now - the 50,000 iu caps 1x per wk - when i started i was at something ridiculous, like 24....  yeah, it makes a HUGE difference, and i can tell when i'm 'due' - doc is going to check how i am doing at next visit.  

But why would it help, other than preventing a deficiency?  It sounds like you have malabsorption issues. 

absolutely, i still have malabsorbtion issues - after years of undiagnosed damage, (as many of us have)  i don't expect my guts to be healed enough to not have malabsorbtion issues.  starting out at 24, and understanding that it takes a while to 'build up' my numbers, an overdose is the least of my worries.  i am more worried about missing my dose, because i only take it once per week.  i am going to see if i can begin taking it (a lesser dose?) once per day - would be easier to remember!!   :)

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I was also in the low 20s and that was after a full summer where I tried to be outside often, who knows where it was the previous winter but I'm betting less than 10 (My wifes level was 16! and she spends more time in the sun than me and doesn't have any health issues).

 

Vitamin D is very important for the gut and immune system, they keep finding out more and more about it each year and tend to re adjust the minimum recommended level up each year. A few years ago most doctors were happy with 60 now everyone is aiming for 120.

 

The trouble I/we have with absorbing Vitamin D unfortunately just highlights how deficient we would be in all the important micro nutrients that you can't easily be tested for. At least with Vit D it's one of the more important things and easy to test and fix.

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Yes vitamin D is important.  It may even help prevent breast cancer and autoimmune diseases, which (I've read) are more common at high latitudes.

But do you know of any reason to take more B12 than is necessary to keep one's blood level in normal range?

I take enough B12 to keep my blood level in normal range, but I haven't heard of a reason to take more. 

Vitamin D is very important for the gut and immune system

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Yes vitamin D is important.  It may even help prevent breast cancer and autoimmune diseases, which (I've read) are more common at high latitudes.

But do you know of any reason to take more B12 than is necessary to keep one's blood level in normal range?

I take enough B12 to keep my blood level in normal range, but I haven't heard of a reason to take more. 

 

I needed to take quite a bit B12 to get it to normal range after diagnosis.  Still not sure the supplementation helped as much as me actually absorbing nutrients from my food -- took about one and a half years post diagnosis for my levels to all read great numbers - .  At diagnosis my D was 17 and my B12 was around 190 -- was anemic my entire life...but not much else was tested nutrient wise until I saw the Celiac Specialist at diagnosis -- everything was at the very low end of normal or official low.  Most had had climbed at 6month, but were not in normal ranges until my year and a half mark.  I stopped all supplements last Fall as I was still having gut issues -- soon will return to a good multivitamin and supplement anything else that may fall back out of range at my next check.

 

If you are below the normal mark in any nutrient -- talk to your doctor about appropriate levels of supplementation.

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Yes vitamin D is important.  It may even help prevent breast cancer and autoimmune diseases, which (I've read) are more common at high latitudes.

But do you know of any reason to take more B12 than is necessary to keep one's blood level in normal range?

I take enough B12 to keep my blood level in normal range, but I haven't heard of a reason to take more. 

Vitamin B12 is a water soluble vitamin  there for difficult to reach a  toxic level. There have been studies that showed no adverse consequences of doses above the RDA  

Vitamin B12 deficiency can potentially cause severe and irreversible damage, especially to the brain and nervous system. At levels only slightly lower than normal, a range of symptoms such as fatigue, depression, and poor memory  may be experienced.

Vitamin B12 deficiency can also cause symptoms of mania and psychosis

 

I also take metformin for diabetes,, studys show that long-term use of metformin substantially increases the risk of B12 deficiency and (in those patients who become deficient) hyperhomocysteinemia, which is "an independent risk factor for cardiovascular disease, especially among individuals with type 2  diabetes

http://en.wikipedia.org/wiki/Vitamin_B12

 

as gottaski mentioned it is importation to have your levels checked by your doctor.

My vitamin B12 levels are still low ,,,,, years and years of malabsorbtion  issues   will do that I guess

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My doctor suggested to me that you need to take whatever amount of B12 you need to stay feeling good. He says it's different for everyone. In Australia doctors are totally happy with levels around 500 and don't really care if you go under 250. Originally mine only barely made the measurable scale at around 100. Everytime I got an injection of B12 I felt so much better within hours, but I'd feel run down again in about a weeks time... SO I got more injections and until I had a level of 1000. Now whenever it drops under 800 or in fact when ever the level is dropping at all I don't feel well. In Japan they aim for a level around 1500-2000! as the normal. It's amazing how different countries have different ideas of what is normal and what is healthy. Without injections I would have no hope of ever getting my levels over 200 and so I would feel sick all the time. 

 

I was so deficient in B12 at one stage I had a bloated gut and numb hands with swollen tingling fingers.

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