Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


Photo
- - - - -

Please Help Me!


  • Please log in to reply

21 replies to this topic

#1 024Mandy

 
024Mandy

    New Community Member

  • Members
  • Pip
  • 10 posts
 

Posted 27 February 2009 - 10:12 PM

HI, I am 19 years old and have been sick since I was a kid( Usually with rashes, swelling, anemia, and joint pain). Never getting any answers I learned to deal with symptons with Diphenhydramine. I started experiencing gut symptoms when I was 16 years old. extreme stomache pain and the 'D' every day. I was being passed off as IBS without having tests done( although at the time I didnt drink alcohol, coffee, eat meat and discovered I was also lactose intollerant). After moving to a new city and being stressed about my BM being unpredictable I saw a new doctor who immediatly tested for celiac disease( by blood, which I also discovered my iron was at 2!). When I found out it was positive my parents took me to ND within the week to get my biopies done( It was at least a 6 month wait here). They were positive and I started a Gluten Free Diet After I left the hospital.

It has now been over a year on an extremely strict gluten free diet and no lactose and live in a gluten free house. I have not felt even the slightest bit better. I had been on a wait list for colonoscopy and repeat endoscopy and had them completed Jan 29th. I have just got the results that I also have microscopic colitis and still have damage from celiac( that may show signs of healing, since this is a new doctor from the one who did my first tests I dont know if he could make an accurate conclusion??). I also have been on Plaquenil for about 8 months for my rashes and joints and its working! :) I am currently triing to find a proper dose of imodium to deal with symptoms and its not going well.

My Doctor has a personality problem and is not giving me proper answers. I guess my questions are how do I know if its the colitis or celiac symptoms? I have ate gluten by accident( once at my parents I had 3 buns made from flour, I thought they were gluten free ones) and I didnt feel any different, no worse no better. My gluten antibodies have returned to normal and am able to keep my iron and b12 at proper levels ( with supplements).

I have had constant 'D' with bloating and pain for 3 years without any changes. I am really frustrated and need to find someone who can help me get through this. I have so many questions and cant find the answers(especially for MC).

Thanks
  • 0

Celiac.com Sponsor:

#2 mushroom

 
mushroom

    Mushroom

  • Advanced Members
  • PipPipPipPipPipPip
  • 9,448 posts
 

Posted 28 February 2009 - 12:42 AM

HI, I am 19 years old and have been sick since I was a kid( Usually with rashes, swelling, anemia, and joint pain). Never getting any answers I learned to deal with symptons with Diphenhydramine. I started experiencing gut symptoms when I was 16 years old. extreme stomache pain and the 'D' every day. I was being passed off as IBS without having tests done( although at the time I didnt drink alcohol, coffee, eat meat and discovered I was also lactose intollerant). After moving to a new city and being stressed about my BM being unpredictable I saw a new doctor who immediatly tested for celiac disease( by blood, which I also discovered my iron was at 2!). When I found out it was positive my parents took me to ND within the week to get my biopies done( It was at least a 6 month wait here). They were positive and I started a Gluten Free Diet After I left the hospital.

It has now been over a year on an extremely strict gluten free diet and no lactose and live in a gluten free house. I have not felt even the slightest bit better. I had been on a wait list for colonoscopy and repeat endoscopy and had them completed Jan 29th. I have just got the results that I also have microscopic colitis and still have damage from celiac( that may show signs of healing, since this is a new doctor from the one who did my first tests I dont know if he could make an accurate conclusion??). I also have been on Plaquenil for about 8 months for my rashes and joints and its working! :) I am currently triing to find a proper dose of imodium to deal with symptoms and its not going well.

My Doctor has a personality problem and is not giving me proper answers. I guess my questions are how do I know if its the colitis or celiac symptoms? I have ate gluten by accident( once at my parents I had 3 buns made from flour, I thought they were gluten free ones) and I didnt feel any different, no worse no better. My gluten antibodies have returned to normal and am able to keep my iron and b12 at proper levels ( with supplements).

I have had constant 'D' with bloating and pain for 3 years without any changes. I am really frustrated and need to find someone who can help me get through this. I have so many questions and cant find the answers(especially for MC).

Thanks

Hi Mandy: I am sorry you are still having problems.

Have you considered that you might have some other food intolerances that you are not aware of. Many of us do and only find out after eliminating gluten. I have had to eliminate not only lactose but corn, soy and nightshade family plants (tomatoes, peppers, potatoes, eggplant). Some are also intolerant of casein, not just lactose. Some do not do well on the gluten-free grains either. And you state you have microscopic colitis. This could be part of your problem.

Perhaps you could go back to the basics of chicken, fish, vegetables, fruits, rice and see if you stabilize. Then you could add things back in one at a time and try to figure out what is causing you problems. If that doesn't work you should go back to your PCP and tell him/her your problems.

I took Plaquenil for three years for my RA; it took care of that but it really stirred up my psoriasis, and eventually stopped working for me. I am glad that it is working for you.

Try being more restrictive with your diet and see if it helps. I hope it does. And then you can find out the culprit for your continuing symptoms.

Good luck, and be sure to let us know how you are doing.
  • 0
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#3 rinne

 
rinne

    Advanced Community Member

  • Banned
  • PipPipPipPipPipPip
  • 1,856 posts
 

Posted 28 February 2009 - 06:42 AM

I'm sorry you are still feeling so badly, I think the suggestion to go to a very basic diet and then add things back in is a very good one. :)
  • 0
A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

#4 dilettantesteph

 
dilettantesteph

    Advanced Community Member

  • Banned
  • PipPipPipPipPipPip
  • 3,035 posts
 

Posted 28 February 2009 - 11:13 AM

Since you still have damage from celiac, you are probably eating gluten without realizing it. You may be one of the "super sensitive" celiacs who react to very small amounts of gluten. A lot of "gluten free" foods are not gluten free for super sensitives. There are various posts on this site which discuss these issues. As others suggested you can go on a very simple diet until you are better. Then add new foods one at a time, waiting a week or so between to make sure that you don't react. Usually doctors assume that you are cheating on your diet, which might be partly why you can't get any straight answers.
  • 0

#5 024Mandy

 
024Mandy

    New Community Member

  • Members
  • Pip
  • 10 posts
 

Posted 01 March 2009 - 09:15 AM

Hi Mandy: I am sorry you are still having problems.

Have you considered that you might have some other food intolerances that you are not aware of. Many of us do and only find out after eliminating gluten. I have had to eliminate not only lactose but corn, soy and nightshade family plants (tomatoes, peppers, potatoes, eggplant). Some are also intolerant of casein, not just lactose. Some do not do well on the gluten-free grains either. And you state you have microscopic colitis. This could be part of your problem.

Perhaps you could go back to the basics of chicken, fish, vegetables, fruits, rice and see if you stabilize. Then you could add things back in one at a time and try to figure out what is causing you problems. If that doesn't work you should go back to your PCP and tell him/her your problems.

I took Plaquenil for three years for my RA; it took care of that but it really stirred up my psoriasis, and eventually stopped working for me. I am glad that it is working for you.

Try being more restrictive with your diet and see if it helps. I hope it does. And then you can find out the culprit for your continuing symptoms.

Good luck, and be sure to let us know how you are doing.



Hello, that sound like great advice, I had no idea that you could be intolerant to the protien in cows milk. Which reminded me that when I was a baby my parents could only feed me goats milk because I was allergic to cows milk. I am thinking there is a good chance I have grown intolerant to the casein.

Starting today I am going to only eat the chicken, rice, fruits, and vegetables. How long should I stay on it if I am not improving? maybe 7 days?

also, could I drink tea? margerine? spices? sugar?
  • 0

#6 mushroom

 
mushroom

    Mushroom

  • Advanced Members
  • PipPipPipPipPipPip
  • 9,448 posts
 

Posted 01 March 2009 - 12:28 PM

also, could I drink tea? margerine? spices? sugar?

I would hold off on the caffeine (some herbal teas would be okay), margarine okay, careful with the spices as some of the mixes contain gluten (McCormicks is supposed to be okay) and perhaps eliminate the sugar for a while in case you have candida overgrowth. Give it a good 7 days and you may well notice improvement. If not, come back for more help. If you do, only add back in one thing at a time! And give it a couple of days.

Others may disagree with me, in which case I am sure they will say so!
  • 0
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#7 efriedm2

 
efriedm2

    Community Member

  • Advanced Members
  • PipPipPip
  • 28 posts
 

Posted 01 March 2009 - 08:54 PM

Since your 2nd endoscopy showed continued damage, you must be getting gluten somewhere! What gluten-free brands have you been eating? I had some trouble over the first year of my gluten-free diet, and found that some supposedly safe brands weren't really so safe. For example, I ate a ton of Amy's products, but came to find that many celiacs react to Amy's and don't trust the brand. So, which brands do you rely on most?
  • 0
Gluten-free since 9/07

#8 024Mandy

 
024Mandy

    New Community Member

  • Members
  • Pip
  • 10 posts
 

Posted 02 March 2009 - 11:19 AM

Since your 2nd endoscopy showed continued damage, you must be getting gluten somewhere! What gluten-free brands have you been eating? I had some trouble over the first year of my gluten-free diet, and found that some supposedly safe brands weren't really so safe. For example, I ate a ton of Amy's products, but came to find that many celiacs react to Amy's and don't trust the brand. So, which brands do you rely on most?

My antibody count has returned to normal which means that I have not been consuming gluten. Also my Doctor said that the damage was not active celiac disease(meaning reoccuring damage). The damage they detected is villi that have not healed since being on the diet ( I am worried that I may have RCD). But if you still want to know I eat mostly food from Kinickinnick. thanks
  • 0

#9 Janessa

 
Janessa

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 118 posts
 

Posted 02 March 2009 - 11:47 AM

I agree with others here you should go on a super simple diet and slowly add foods back in, talk to your doctor about an elimination diet, it helped me discover I was having very strong reactions to corn and also reacting to soy and rice.
  • 0
peanut free Nov 06, gluten free June 07, corn and soy free July 08, latex free Oct 08 Banana and kiwi cross reacting with latex allergy
happily vegetarian

#10 rinne

 
rinne

    Advanced Community Member

  • Banned
  • PipPipPipPipPipPip
  • 1,856 posts
 

Posted 02 March 2009 - 01:25 PM

Hello, that sound like great advice, I had no idea that you could be intolerant to the protien in cows milk. Which reminded me that when I was a baby my parents could only feed me goats milk because I was allergic to cows milk. I am thinking there is a good chance I have grown intolerant to the casein.

Starting today I am going to only eat the chicken, rice, fruits, and vegetables. How long should I stay on it if I am not improving? maybe 7 days?

also, could I drink tea? margerine? spices? sugar?


I think you may be onto something with the casein, I would think that if it is going to help then seven days should at least give you an inkling of whether you are on the right track. There are a percentage of celiacs who just don't heal on going gluten free, you are not alone. :) Some of us have problems with all carbs including rice. :(

I think olive oil or coconut oil, or ghee. Fresh ginger is great for the digestion, you can add it to stir fries or make tea with it or grate/squeeze the juice and add it to water. Peppermint tea, just pure peppermint or spearmint is great for settling the stomach. Some vegetables, the brassicas like cabbage or broccoli can be hard to digest so you might want to avoid them the first week, the nightshades, potatoes, eggplant, tomatoes may contribute to inflamation. Too much fruit is probably not a great idea either, one or two pieces a day.

I think Kinickinnick is challenging for some, I think they use something that is high in glutamates and glutamates don't agree with everyone. MSG is a glutamate.

A food journal is helpful too. :)
  • 0
A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

#11 Fiddle-Faddle

 
Fiddle-Faddle

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 4,159 posts
 

Posted 02 March 2009 - 03:33 PM

Be aware that most margarines contain casein (read the label)--you'll have to look for special dairy-free margarine.

I was wondering if the Plaquenil or something else you are on might be causing your intestinal symptoms?

Also wondering if some kind of bacterial infection of the gut or even Lyme disease might be a possibility. One member here found that she had tapeworms, which caused similar symptoms.

Good luck, and please keep us posted.
  • 0

#12 Gfresh404

 
Gfresh404

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 421 posts
 

Posted 03 March 2009 - 05:31 PM

I'm just curious but what is your diet like?
  • 0

#13 024Mandy

 
024Mandy

    New Community Member

  • Members
  • Pip
  • 10 posts
 

Posted 04 March 2009 - 11:55 AM

I'm just curious but what is your diet like?

I usually eat alot of fresh vegetables and meats, alot of rice(its my favorite!) and other starches. I know I should eat more fruit. I only have bread once in a while because I don't have time to keep up with making it. I eat on a pretty regular schedual (breakfast around 6, lunch 11:30, supper about 5:30 )I find that if I eat more often and smaller meals I have to use the bathroom more often so I can keep bm's undercontrol better if I eat 3 meals and about at the same time everyday. I think I eat pretty healthy I do most cooking myself and I'm pretty small but I have a large appetite. I eat alot of soy products ( icecream, creamcheese, milk). I occasionaly eat dairy but I take lactase enzymes. I try to stay away from junk food like chips, candy and other processed packaged foods, but popcorn gets the best of me.


So this is my 4th day on a very basic diet (vegys fruit chicken rice) and there has been no improvement. I will stay on the diet for about 3 or 4 more days. If I dont get better I guess I can blame the MC or RCD, which stinks becasue there is nothing I can do about it. I was sure it was going to be the casein!
  • 0

#14 024Mandy

 
024Mandy

    New Community Member

  • Members
  • Pip
  • 10 posts
 

Posted 04 March 2009 - 12:01 PM

When I have consumed a large amount of gluten or any amount( by mistake of course!) I have not reacted at all. In fact I have never had a reaction and I started the gluten-free diet over a year ago. Why do you think nothing happends???
  • 0

#15 Fiddle-Faddle

 
Fiddle-Faddle

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 4,159 posts
 

Posted 04 March 2009 - 02:45 PM

If you are lactose-free but not casein-free, it's quite likely that your gluten-damaged intestines have not been able to heal because of the casein. Casein is the protein in dairy (lactose is the sugar in dairy). There have been a lot of reports on this board that casein prevents the gut from healing. http://www.celiac.co...Celiac-Disease/ Lactase pills do NOTHING to help with casein sensitivity.

For joint pain, it seems that both gluten and casein can trigger RA and RA-type joint pain. Apparently, many people are able to get rid of their joint pain by eliminating both: http://paleodiet.com/ra/

Microwave popcorn and pre-seasoned popcorn do contain dairy, as well as maltodextrin, which is not gluten, but a few of us here are sensitive to it. In fact, I seem to react to maltodextrin quite easily, but my gluten reactions are "invisible!" In addition, quite a few people on this board are also sensitive to corn and/or soy.

Are you eating rotisserie chicken? Many brands contain gluten, believe it or not.

What is RCD?
  • 0




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: