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Self-diagnosed Celiac

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Hello everyone:

I have hopefully diagnosed my 10 month battle with (first) bloating, gas; followed by numerous daily episodes of watery diarrhea, weight loss, plus fatigue; then, finally, hip joint pain and leg cramps...plus other symptoms that I'm sure I had just taken in stride. Unfortunately, I don't have medical insurance at present, but, frankly, I'm not sure if I would have put my health in the hands of my PCP because of the lack of knowledge MD's have concerning celiac disease. Anyway, I started myself on a gluten-free diet two weeks ago. I am an RN, and an avid good nutritional advocate, so I do have a good knowledge of the requirements needed to strictly adhere to this diet...including all the ways gluten is "hidden" in various added ingredients. I have been doing all my own cooking so I am sure I have not ingested any gluten for this two-week period. I have not, however, completely cut out dairy products...only limited them.

My guestion/concern is...I am still having watery diarrhea. I know that it will take some time to subside since I did endure 2-3 months of it before starting the diet. But, shouldn't I be noticing some improvement at this point? I'm getting discouraged!!!!!

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Hi Link,

Welcome to the board!

Maybe at some point as a nurse you could help start a local campaign to help improve the AMA's awareness of celiac? Despite the fact you don't have insurance, there are certain blood tests that are inexpensive that can indicate whether or not you potentially have celiac. I think by Enterolab?? Someone help me here...

At first there is a big learning curve--esp. getting rid of all trace gluten. It is in the most unlikely places. I would even check those disposable gloves they have at hospitals. What kind of powder do they use inside them?? Cetyl alcohol is OK but many other kinds of alcohol are gluten based. Even certain building materials have gluten in them like most pre mixed plasters, Fixall etc.

In addition, anything wooden like old cutting boards and wooden bowls and spoons, need to be replaced since they are so absorbent and will continue to give you "cross contamination" of gluten (CC). Similarly, iron pots either need to be replaced or put through a 600 degree cleaning cycle in your oven to destroy the glutenous residue.

I also had to replace shampoos and soaps as well as toothpaste and dental floss that had gluten in it. Lipstick and other beauty aids usually need to be replaced too. And boyfriends need to brush and floss their teeth (and rinse) before they get kisses from someone who has celiac!

There is a good list here on celiac.com that delineates various glutenous sources that one should avoid.

I have learned its important to always wash my hands before I eat in order to avoid trace gluten from some handshake or doorknob or whatever.

Also do not buy your food from bulk bins since they often are CC'd!

And yes--its very true--the milk products need to cease at least at first until your intestines heal except perhaps for yogurt. The lactose molecules are large and cause digestive disturbance at first in particular. In my case I do better when I make my own whole milk yogurt and let it ferment 24 hours or more in my oven (with just the pilot light on) since then all the lactose has been fermented out of it.

If you continue to have problems with D unabated, consider going off other grains as well and look into other sources of allergy. Many who have celiac develop a kind of "leaky gut" due to the flattened or scarred villi which then makes food sensitivities common. Sugar and various food additives too are often a no no.

Hope this is not overwhelming you! Eventually your dietary choices should improve as you heal.

Meanwhile, hot carob tea sweetened with stevia just might help stop the D for now--that or blackberry or raspberry leaf tea with some (pure unadulterated) cinnamon.... That plus enterically coated acidophilus...

Bea

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I still had D for some time after going gluten-free. I had normally formed stools also. It was weird but I was getting trace gluten for some time as I felt my way through the maze. Wish I had found this forum right away! It would be worth a trial completely dairy free to see if that relieves some of the problem. You could have another food sensitivity or it could just be taking extra time for your healing. A food journal would be a good idea while you are figuring it all out.

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If the D is very watery and hard to control you may want to consider ruling out Microscopic Colitis. Here is an Article from Science Direct (Dr. Peter H.R. Green is a very respected Celiac expert)

An Association Between Microscopic Colitis and Celiac Disease

Peter H.R. Green, Corresponding Author Contact Information, E-mail The Corresponding Author, Jun Yanglow Jianfeng Cheng

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Since you've just started going gluten free it might be a good idea to try cutting out the dairy and soy for a while until your intestines are healed. Also you might think you are gluten free but have overlooked something (spices, flavored coffee, gum, root beer). I thought I was doing good until I read this site. I've been nursing since 1974 so I too thought I was more aware. lol Now after being gluten free for years, I'm still learning. Let us know how you are doing.

Some people are also sensitive to the xanthan gum in gluten free products.

http://www.celiac.com/articles/21710/1/Cou...very/Page1.html

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If the D is very watery and hard to control you may want to consider ruling out Microscopic Colitis. Here is an Article from Science Direct (Dr. Peter H.R. Green is a very respected Celiac expert)

An Association Between Microscopic Colitis and Celiac Disease

Peter H.R. Green, Corresponding Author Contact Information, E-mail The Corresponding Author, Jun Yanglow Jianfeng Cheng

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Hi Link,

Welcome to the board!

Maybe at some point as a nurse you could help start a local campaign to help improve the AMA's awareness of celiac? Despite the fact you don't have insurance, there are certain blood tests that are inexpensive that can indicate whether or not you potentially have celiac. I think by Enterolab?? Someone help me here...

At first there is a big learning curve--esp. getting rid of all trace gluten. It is in the most unlikely places. I would even check those disposable gloves they have at hospitals. What kind of powder do they use inside them?? Cetyl alcohol is OK but many other kinds of alcohol are gluten based. Even certain building materials have gluten in them like most pre mixed plasters, Fixall etc.

In addition, anything wooden like old cutting boards and wooden bowls and spoons, need to be replaced since they are so absorbent and will continue to give you "cross contamination" of gluten (CC). Similarly, iron pots either need to be replaced or put through a 600 degree cleaning cycle in your oven to destroy the glutenous residue.

I also had to replace shampoos and soaps as well as toothpaste and dental floss that had gluten in it. Lipstick and other beauty aids usually need to be replaced too. And boyfriends need to brush and floss their teeth (and rinse) before they get kisses from someone who has celiac!

There is a good list here on celiac.com that delineates various glutenous sources that one should avoid.

I have learned its important to always wash my hands before I eat in order to avoid trace gluten from some handshake or doorknob or whatever.

Also do not buy your food from bulk bins since they often are CC'd!

And yes--its very true--the milk products need to cease at least at first until your intestines heal except perhaps for yogurt. The lactose molecules are large and cause digestive disturbance at first in particular. In my case I do better when I make my own whole milk yogurt and let it ferment 24 hours or more in my oven (with just the pilot light on) since then all the lactose has been fermented out of it.

If you continue to have problems with D unabated, consider going off other grains as well and look into other sources of allergy. Many who have celiac develop a kind of "leaky gut" due to the flattened or scarred villi which then makes food sensitivities common. Sugar and various food additives too are often a no no.

Hope this is not overwhelming you! Eventually your dietary choices should improve as you heal.

Meanwhile, hot carob tea sweetened with stevia just might help stop the D for now--that or blackberry or raspberry leaf tea with some (pure unadulterated) cinnamon.... That plus enterically coated acidophilus...

Bea

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Whereas steroids may be what you need if you do actually have microscopic colitis, it wouldn't be my first choice since the side effects can be dangerous. Plus steroids just cover up symptoms rather than address them directly.

I agree however that the thing to look at here is the damage to the villi. There are non steroid ways to soothe and help heal the villi. Going off all irritating foods is a first of course--especially milk products and possibly for a while all grains and sugars--and only eat cooked vegetables (no raw lettuce etc.).

There are basic herbs however that can also help as well as taking enterically coated acidophilus that agrees with you.

The most useful herbs that I have found are marshmallow root and/or slippery elm (depends on the person). For me the marshmallow root works better--but others depend on the slippery elm. These two herbs are emollient. They soothe and take down inflammation in the intestines and the gut in general. Marshmallow root is also soothing and healing for the kidneys.

Carob, cinnamon, blackberry leaf and raspberry leaf all are good against diarrhea. The carob is nice sweetened with stevia and made into a tea.

Nattokinase, bromelain/papain and/or some other fibronilytic enzymes can help heal and get rid of scar tissue as well as get rid of excess fibrin built up in the heart and veins and the various organs. This is best taken on an empty stomach with a basic general digestive enzyme to balance it out.

I have found plant based enzymes are often good to take with meals to help with better digestion.

Once you feel a little better, it is a good idea to take 1/4 tsp. apple pectin and then when even better, take the pectin mixed in with raw flax seed (start with one tablespoon flax seed a day) ground up in your dedicated coffee grinder (dedicated for just the flax seed). If you put the pectin in the flax and then grind, the pectin will mix with the water better rather than separate into clumps. This is a very mild yet effective bulking agent. I personally cannot tolerate pre mixed varieties since most have gluten in them or some other often irritating agent that doesn't agree with me.

If you still are having problems, I would check to see if you might have some kind of parasites. I you have roundworms, pinworms or giardia for instance you would want to know about it!! Good simple general herbal anti parasitic agents are olive leaf and neem leaf. I like them mixed together. I use them not necessarily against parasites but against fungal overgrowth, bacteria and viruses etc. However both are known to be very good anti parasitics too. Initially however you might get worse for the first 2 to 3 days (the Herxheimer effect). However if you do, then you know its working, so just reduce the dose but stick with it. Ifyou follow this route, be certain to take extra acidlophilus--some hours apart from whatever anti parasitic agent you might be using.

Bea

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Thank you, everyone, for all your ideas and suggestions for my ongoing diarrhea after starting, what I perceived to be, a gluten-free diet two weeks ago.

Several of you felt that I should eliminate dairy and another recommended I try cutting out other grains as well. One of you thought that keeping a food journal would help me to identify any offending food or ingredient. Still another suggested I investigate for possible gluten in flavored coffee or spices or trace gluten in other areas of the kitchen.

Some of you discussed the possibility of cross contamination, while others offered other possible causes such as microscopic colitis, which I have to admit, I have considered. I can't say that I am thrilled at the thought of taking steriods for that.

I appreciate all these suggestions and ideas. I did find the list of foods that may be gluten ladened on celiac.com and I will try the hot carob tea with stevia...if I can find carob tea somewhere!

I appreciate all these suggestions as I face the daunting task of living with celiac disease. I look forward to healing myself and feeling better, and I just MAY undertake the AMA to raise awareness of Celiac Disease when I do!!! :)

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Whereas steroids may be what you need if you do actually have microscopic colitis, it wouldn't be my first choice since the side effects can be dangerous. Plus steroids just cover up symptoms rather than address them directly.

I agree however that the thing to look at here is the damage to the villi. There are non steroid ways to soothe and help heal the villi. Going off all irritating foods is a first of course--especially milk products and possibly for a while all grains and sugars--and only eat cooked vegetables (no raw lettuce etc.).

There are basic herbs however that can also help as well as taking enterically coated acidophilus that agrees with you.

The most useful herbs that I have found are marshmallow root and/or slippery elm (depends on the person). For me the marshmallow root works better--but others depend on the slippery elm. These two herbs are emollient. They soothe and take down inflammation in the intestines and the gut in general. Marshmallow root is also soothing and healing for the kidneys.

Carob, cinnamon, blackberry leaf and raspberry leaf all are good against diarrhea. The carob is nice sweetened with stevia and made into a tea.

Nattokinase, bromelain/papain and/or some other fibronilytic enzymes can help heal and get rid of scar tissue as well as get rid of excess fibrin built up in the heart and veins and the various organs. This is best taken on an empty stomach with a basic general digestive enzyme to balance it out.

I have found plant based enzymes are often good to take with meals to help with better digestion.

Once you feel a little better, it is a good idea to take 1/4 tsp. apple pectin and then when even better, take the pectin mixed in with raw flax seed (start with one tablespoon flax seed a day) ground up in your dedicated coffee grinder (dedicated for just the flax seed). If you put the pectin in the flax and then grind, the pectin will mix with the water better rather than separate into clumps. This is a very mild yet effective bulking agent. I personally cannot tolerate pre mixed varieties since most have gluten in them or some other often irritating agent that doesn't agree with me.

If you still are having problems, I would check to see if you might have some kind of parasites. I you have roundworms, pinworms or giardia for instance you would want to know about it!! Good simple general herbal anti parasitic agents are olive leaf and neem leaf. I like them mixed together. I use them not necessarily against parasites but against fungal overgrowth, bacteria and viruses etc. However both are known to be very good anti parasitics too. Initially however you might get worse for the first 2 to 3 days (the Herxheimer effect). However if you do, then you know its working, so just reduce the dose but stick with it. Ifyou follow this route, be certain to take extra acidlophilus--some hours apart from whatever anti parasitic agent you might be using.

Bea

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Thank you, everyone, for all your ideas and suggestions for my ongoing diarrhea after starting, what I perceived to be, a gluten-free diet two weeks ago.

Several of you felt that I should eliminate dairy and another recommended I try cutting out other grains as well. One of you thought that keeping a food journal would help me to identify any offending food or ingredient. Still another suggested I investigate for possible gluten in flavored coffee or spices or trace gluten in other areas of the kitchen.

Some of you discussed the possibility of cross contamination, while others offered other possible causes such as microscopic colitis, which I have to admit, I have considered. I can't say that I am thrilled at the thought of taking steriods for that.

I appreciate all these suggestions and ideas. I did find the list of foods that may be gluten ladened on celiac.com and I will try the hot carob tea with stevia...if I can find carob tea somewhere!

I appreciate all these suggestions as I face the daunting task of living with celiac disease. I look forward to healing myself and feeling better, and I just MAY undertake the AMA to raise awareness of Celiac Disease when I do!!! :)

Yay! Go girl!!

Bea

PS--they sell carob in containers at Whole Foods as well as in bulk at bulk herb stores (which should be OK__just not in the same store where they sell bulk glutenous items). Usually the carob has trace nut contamination so keep that in mind...I find it best to take it every other day or more apart than that for this reason...since I am allergic to most nuts. Meanwhile I often top it off with a little coconut milk--something I can have every few days but not every day for the same reason.

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Whereas steroids may be what you need if you do actually have microscopic colitis, it wouldn't be my first choice since the side effects can be dangerous. Plus steroids just cover up symptoms rather than address them directly.

I agree however that the thing to look at here is the damage to the villi. There are non steroid ways to soothe and help heal the villi. Going off all irritating foods is a first of course--especially milk products and possibly for a while all grains and sugars--and only eat cooked vegetables (no raw lettuce etc.).

There are basic herbs however that can also help as well as taking enterically coated acidophilus that agrees with you.

The most useful herbs that I have found are marshmallow root and/or slippery elm (depends on the person). For me the marshmallow root works better--but others depend on the slippery elm. These two herbs are emollient. They soothe and take down inflammation in the intestines and the gut in general. Marshmallow root is also soothing and healing for the kidneys.

Carob, cinnamon, blackberry leaf and raspberry leaf all are good against diarrhea. The carob is nice sweetened with stevia and made into a tea.

Nattokinase, bromelain/papain and/or some other fibronilytic enzymes can help heal and get rid of scar tissue as well as get rid of excess fibrin built up in the heart and veins and the various organs. This is best taken on an empty stomach with a basic general digestive enzyme to balance it out.

I have found plant based enzymes are often good to take with meals to help with better digestion.

Once you feel a little better, it is a good idea to take 1/4 tsp. apple pectin and then when even better, take the pectin mixed in with raw flax seed (start with one tablespoon flax seed a day) ground up in your dedicated coffee grinder (dedicated for just the flax seed). If you put the pectin in the flax and then grind, the pectin will mix with the water better rather than separate into clumps. This is a very mild yet effective bulking agent. I personally cannot tolerate pre mixed varieties since most have gluten in them or some other often irritating agent that doesn't agree with me.

If you still are having problems, I would check to see if you might have some kind of parasites. I you have roundworms, pinworms or giardia for instance you would want to know about it!! Good simple general herbal anti parasitic agents are olive leaf and neem leaf. I like them mixed together. I use them not necessarily against parasites but against fungal overgrowth, bacteria and viruses etc. However both are known to be very good anti parasitics too. Initially however you might get worse for the first 2 to 3 days (the Herxheimer effect). However if you do, then you know its working, so just reduce the dose but stick with it. Ifyou follow this route, be certain to take extra acidlophilus--some hours apart from whatever anti parasitic agent you might be using.

Bea

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Bea,

You are a wealth of information on celiac disease and everything else closely related for that matter. I wanted to pick your brain about microscopic colitis.

From everything I have read, IBS is the new name for microscopic colitis. Since IBS and IBD are associated with Celiac Disease, than I am assuming that if I can get the celiac disease under control, then the microscopic colitis/IBS will improve as well. Do you concur?

I really don't want to get into the whole steroid thing...much perfering your line of thought as to the marshmallow root or slippery elm to soothe the inflammation. And I will look for the carob at our local herb shop...closest Whole Foods is 2 hrs. away. I live in the mountains of Western MD.

I would be grateful for your shared thoughts.

Linda

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Microscopic Colitis is an actual disorder whereas IBS is a syndrome diagnosed only after all other possible disorders have been found negative. Microscopic Colitis can be seen during a colonoscopy when the GI uses a certain instrument siga something....others can jump in here, don't remember the exact name, because it is hard to see otherwise. I belong to another board called perskyfarms.com where they suffer from microscopic colitis and there are celiacs there as well plus actual doctors. Many of them are healed by just going gluten free, so a gluten free diet is highly emphasized. A warm group of people if you want to ask them any questions as well. I don't have MC but thought I might in the past so I joined their forum and just haven't left because we face alot of the same issues and they are so friendly. Don't get me wrong.... I love this forum too! :)

Isn't Bea wonderful!

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I still had D for some time after going gluten-free. I had normally formed stools also. It was weird but I was getting trace gluten for some time as I felt my way through the maze. Wish I had found this forum right away! It would be worth a trial completely dairy free to see if that relieves some of the problem. You could have another food sensitivity or it could just be taking extra time for your healing. A food journal would be a good idea while you are figuring it all out.

I was told that a tell-tell sign of being "glutened" is if your stools are loose and float instead of sink. Is this true? Because my stools rarely EVER sink.

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