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Celiac, Colitis, Ibs And Diverticulitis... What Can I Eat?


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#1 WitchyWoman

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Posted 28 February 2011 - 07:11 PM

Hi~~~~
This is my first time on this forum. I have had severe Diverticulitis and IBS for 14 years. I have had multiple abdominal surgeries removing the sigmoid, transverse and transending colon. I have been in a catch 22 of every time they do surgery I have worse adhesions, so they do more surgery and it results in more adhesions ect. I have suffered with severe abdominal pain and D for years. I recently went to John Hopkin's and was diagnosed with Celiac Disease and Colitis as well as an infection in the stomach and in the intestines. I go back to the Dr on March 10th to discuss antibiotics and a new regimine of RX. Unfortunately my insurance does not cover a dietician to assist me in selecting foods that will work with all 4 diagnosis and I can't afford $500 per hour for a dietician. Is there anyone else out there with similar multiple diagnosis that could assist with what Not to eat or as resource that may assist me? It has been very difficult dealing with the Diverticulitis and IBS and now I just really feel overwhelmed with the addition of two more diagnosis.
Thanks in advance!!!
WitchyWoman
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Emergency abdominal surgery in 1997 due to ovaries cystizing and rupturing
MRSA set in at hospital which led to intestines being eaten from the outside in causing severe diverticulitis
1997 Sigmoid colon removed
1998 Transverse colon removed
1999 Transcending colon and appendix removed
2000 diagnosed with severe IBS
2005 diagnosed with ulcerated illium
2/28/11 diagnosed with Celiac Disease and Colitis
‎"Life is not weathering the storm; it is learning to dance in the rain"

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#2 captaincrab55

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Posted 28 February 2011 - 08:21 PM

Witchy Woman, Whats your Doctor's name from Hopkins ???
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I'm a New Man Without GLUTEN!

#3 T.H.

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Posted 28 February 2011 - 10:22 PM

So, so sorry you're having such trouble.

It's highly likely you will end up with less diagnoses by the end of this. Which is good, really good, but you may want to prepare for potential frustration and anger over how long it took to be diagnosed. I could be wrong - obviously I don't know your health - but IBS has a good chance of being missed Celiac Disease. :( Diverticulitis can be a complication from Celiac Disease, too, or actually WAS Celiac Disease.

"...Recognizing celiac disease can be difficult because some of its symptoms are similar to those of other diseases. Celiac disease can be confused with irritable bowel syndrome, iron-deficiency anemia caused by menstrual blood loss, inflammatory bowel disease, diverticulitis, intestinal infections, and chronic fatigue syndrome. As a result, celiac disease has long been underdiagnosed or misdiagnosed. As doctors become more aware of the many varied symptoms of the disease and reliable blood tests become more available, diagnosis rates are increasing..."
( from http://digestive.nid...es/pubs/celiac/ )

Colitis can also be a result of untreated Celiac Disease, although it can be something else, too (I believe Crohn's Disease, at times).


There is a good list here on celiac.com what ingredients you need to avoid on a gluten free diet if you do a small search (unsafe ingredient list for things to avoid, and a safe ingredient list for what you can eat). I'd try to avoid most obvious dairy, too, as many celiacs are lactose intolerant until they are healed up (a few months, at least), and it sounds like you've had gut trouble for quite some time. With the antibiotics, I would also try to find some probiotics, because Celiac guts need all the help we can get, and the antibiotics will make that even more vital, ya know? Liquid probiotic is better. Capsule or pill ones are pretty much a waste of money as no food for the bacteria cultures mean they are dying off as soon as they are encapsulated. <_<

A book I found recently that might help with trying to come up with your own diet is "Nutrition for Dummies." It just has some of the basics you want to think about in your nutrition, and along with the gluten free lists here, I think it might help you get at least a fairly good diet for your condition.

Wishing you good luck, and hoping that Celiac Disease is THE answer that can get you back on the road to better health.
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#4 yolo

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Posted 01 March 2011 - 01:06 AM

I agree with Shauna. I wish you much good luck! Finding out you have celiac will no doubt prove to be a blessing which can help you finally be on the healing path and heal your gut much better than any surgeries etc.

In addition however, in order to speed up your healing you might want to consider going on a basic diet of meat, veggies, squash, brown rice and the like rather than eat pre-prepared foods. At first you should avoid raw vegetables since they probably are too irritating for your system right now. If you crave sweets, consider using powdered stevia instead of sugar, especially while you are healing. Some people find honey better than sugar, but for many sweet carbs are not good in any quantity.

Taking things like bromelain/papain and pancreatic enzymes could be important at first to improve your digestion in your intestines. If you can tolerate pineapple and/or papaya, so much the better since that is what the bromelain/papain come from.

Taking nattokinase or some other fibronylitic enzymes on an empty stomach should help counteract the scar tissue from all those surgeries. I suggest you Google it and find out more about it. Taking marshmallow root powder regularly to soothe and heal your intestines might also be a good idea at first.

Many folks here are also allergic to other things like, as mentioned, milk products, especially at first. Nevertheless many here can tolerate plain yogurt, especially if it is home made and cultured 24 hours to get rid of the lactose. It also greatly increases the probiotic content.

For those who still have a problem with yogurt, fermented cabbage inoculated with probiotics is another alternative. You can find instructions about it by looking at the old SCD thread (specific carbohydrate diet) here on celiac.com.

For me the SCD did not help me, however it does help many. I discovered just recently that I have salicylic acid sensitivity that makes eating things like zucchini and honey a real no no and that for the likes of people like me brown rice is actually very healing. Just goes to show that we are all different.

Other common allergens are soy, corn, the nightshade family, nuts, citrus. Though with leaky gut syndrome (often caused by damage to the villi from celiac), one can become sensitive to most anything. Again, when you heal more, its likely you will become less reactive to so many things (in case you are to begin with that is...).

Again, welcome and good luck!

Bea
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Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

#5 Nor_TX

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Posted 01 March 2011 - 08:32 AM

I also have multiple digestive issues. I have Colitis, IBS, GERD, Reflux, Hiatal Hernia, Gluten intolerance, Dairy and Lactose intolerance, Egg intolerance, and Peanut Butter gives me Angelina Jollie lips although no formal diagnosis.

I am facing possible whole Thyroid gland and/or nodule surgery. My Vitamin D and iron are low and every 5 weeks I get Remicade infusions along with lots of drugs to stave off reactions. I have arthritis in my knees and may not be able to have a total knee replacement because I have had an allergic response to both nickel and titanium.

So I know exactly what you are going through. I was at a loss what to eat until I decided the only one who could come up with an appropriate list of foods to eat was me. I didn't have a dietition and relied on my body and the research I did on the Internet.

I made a page of paper for every digestive/medical issue I was going through and proceeded to list those foods that I could NOT tolerate for one reason or another and the list of foods I COULD eat. Then I cross referenced each of the pages and made a master list of what I could eat.

When I found out about a new food, I would add it to the list in pencil until I ate it a few times and it could be permanently added to my master list.

The list was very spare at the beginning. Some foods have gotten onto the list and have been deleted from the list such as: Chex cereal (I thought it was wonderful at the beginning, but my stomach didn't) When I try a new food I make a note of how I felt immediately after eating, and later that day. If I get a couple of negative comments I just figure it is something else I cannot tolerate.

I have just added sardines to my list and so far everything is going great. I have tried them several different ways and tried both the mustard and plain packed in water. This one food has helped me so much when I just want to grab something to take to work and not have to do alot of preparing.

For me, having these food issues makes it all about me. I have to make a concious decision on everything I eat. I plan my days meals the night before. It's alot of work for sure, but now I have my "go to" foods. I've just discovered haddock frozen fillets and have made them a few different ways. I have always loved fish but turned away because DH doesn't eat fish. Lately though, I am back to this favorite food with great results.

Keep your food journal and sooner rather than later, a pattern of "safe foods" will emerge and you will have your own little database of acceptable foods that meet the needs of all your health issues.
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Gluten Intolerance, Colitis, IBS, Lactose and Casein Intolerance, Gastro-Paresis, GERD, Arthritis. Taking Remicade and Asacol, 2 Prilosec/day among other meds. Officially a senior citizen! New knee is doing well.. now about that other knee...

Food is in my dreams and in my nightmares!

#6 WitchyWoman

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Posted 01 March 2011 - 05:01 PM

Witchy Woman, Whats your Doctor's name from Hopkins ???

I had Dr. Milligan but he fell and broke his hip and retired. He did all of my testing but now I start all over next week with a new Dr...... Dr. Stien
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Emergency abdominal surgery in 1997 due to ovaries cystizing and rupturing
MRSA set in at hospital which led to intestines being eaten from the outside in causing severe diverticulitis
1997 Sigmoid colon removed
1998 Transverse colon removed
1999 Transcending colon and appendix removed
2000 diagnosed with severe IBS
2005 diagnosed with ulcerated illium
2/28/11 diagnosed with Celiac Disease and Colitis
‎"Life is not weathering the storm; it is learning to dance in the rain"

#7 WitchyWoman

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Posted 01 March 2011 - 05:26 PM

So, so sorry you're having such trouble.

It's highly likely you will end up with less diagnoses by the end of this. Which is good, really good, but you may want to prepare for potential frustration and anger over how long it took to be diagnosed. I could be wrong - obviously I don't know your health - but IBS has a good chance of being missed Celiac Disease. :( Diverticulitis can be a complication from Celiac Disease, too, or actually WAS Celiac Disease.

"...Recognizing celiac disease can be difficult because some of its symptoms are similar to those of other diseases. Celiac disease can be confused with irritable bowel syndrome, iron-deficiency anemia caused by menstrual blood loss, inflammatory bowel disease, diverticulitis, intestinal infections, and chronic fatigue syndrome. As a result, celiac disease has long been underdiagnosed or misdiagnosed. As doctors become more aware of the many varied symptoms of the disease and reliable blood tests become more available, diagnosis rates are increasing..."
( from http://digestive.nid...es/pubs/celiac/ )

Colitis can also be a result of untreated Celiac Disease, although it can be something else, too (I believe Crohn's Disease, at times).


There is a good list here on celiac.com what ingredients you need to avoid on a gluten free diet if you do a small search (unsafe ingredient list for things to avoid, and a safe ingredient list for what you can eat). I'd try to avoid most obvious dairy, too, as many celiacs are lactose intolerant until they are healed up (a few months, at least), and it sounds like you've had gut trouble for quite some time. With the antibiotics, I would also try to find some probiotics, because Celiac guts need all the help we can get, and the antibiotics will make that even more vital, ya know? Liquid probiotic is better. Capsule or pill ones are pretty much a waste of money as no food for the bacteria cultures mean they are dying off as soon as they are encapsulated. <_<

A book I found recently that might help with trying to come up with your own diet is "Nutrition for Dummies." It just has some of the basics you want to think about in your nutrition, and along with the gluten free lists here, I think it might help you get at least a fairly good diet for your condition.

Wishing you good luck, and hoping that Celiac Disease is THE answer that can get you back on the road to better health.

y
Thank you so much for the response!! It has been very frustrating over the years. It actually all started with my ovaries cystizing and rupturing in 1997...... They did emergency surgery and while I was in the local hospital I attained MRSA (what a gift!! LOL) and it set into my gut. The MRSA basically ate my intestines up form the outside in, causing the severe diverticulits. After months of IV antibiotics and numerous pain meds and three subsequent abdominal surgeries removing the sigmoid, transverse and transending colon (total of 5 abdominal surgeries from the breast bone down over a three year period..... ) The Dr's basically said you are going to just have to live with this... "D" ten times a day on a good day, bedridden on bad days, severe abdominal pain and too many RX to mention.

I took myself off of a lot of the meds and stopped eating raw vegtables, corn, popcorn, seeds, anything fried or hard to digest.... ect out of my diet and it helped...... but not enough, so I finally requested to see a big city hospital doctor LOL at John Hopkins. I only have a few inches of intestines left and I know, if I don't get whatever is going on under control, I will end up on a bag and I am willing to do anything to avoid that.

I go back up to John Hopkins on March 10th and they are supposed to start me on antibiotics and new RX's. With removing the above foods and then the gluten foods.... LOL it sounds like it leaves me with meats and expensive gluten free foods. I am hoping the Dr. will write a letter to my insurance company (I thought Blue Cross Blue Shield was a good insurance company LOL... they only cover seeing a dietician if you are diabetic)) to request a special exemption so that I can see a dietician, which would allieviate a lot of my concerns. So fingers crossed that the insurance company realizes that it is much cheaper $2000 to send me to a dietician that the $100,000's it will cost if I have to undergo surgery again.

Thank you so much for your advice!! I am open to any suggestions... I am just feeling a little overwhelmed at this point and I know it sounds strange but I am glad to finally have the Celiac diagnosis so that I can really fight back and my Dr's finally realize it was real pain.... Thanks again!!! :)
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Emergency abdominal surgery in 1997 due to ovaries cystizing and rupturing
MRSA set in at hospital which led to intestines being eaten from the outside in causing severe diverticulitis
1997 Sigmoid colon removed
1998 Transverse colon removed
1999 Transcending colon and appendix removed
2000 diagnosed with severe IBS
2005 diagnosed with ulcerated illium
2/28/11 diagnosed with Celiac Disease and Colitis
‎"Life is not weathering the storm; it is learning to dance in the rain"


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