Crohns and Juvenile Diabetes - has anyone had both?

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toothfairy
New Member


Date Joined Dec 2007
Total Posts : 7
   Posted 5/17/2008 11:17 AM (GMT -7)   
Has anyone had both Junvenile Diabetes and Crohn's disease?  My 11 year old grandson was diagnosed with Juvenile Diabetes 2 years ago and now has been diagnosed with Crohn's Disease.  The doctors do NOT want to give him predisone because predisone can cause a diabetic to go into a coma.  If you have these same diseases, what did the doctors put you on initially to get the inflammation down.  They are only giving him Tylenol 3 and it is not cutting the pain from the Crohns.  Any suggestions before we go to another doctor for a second opinion?  Thank you

EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 5/18/2008 6:02 AM (GMT -7)   
Hi Toothfairy...I am so sorry for your grandson... I'm going to respond partially to bump this up in hopes someone with both CD and T1 Diabetes will see and respond.

As far as inflammation goes, I'm no expert, but there is something called "enteral nutrition", also sometimes referred to as a "semi-elemental diet", which has great success getting children into remission. It is a liquid diet (allowing the intestines to heal), and has been proven to be as effective as prednisone in achieving remission. Whether your grandson can do this given the fact he has diabetes, I certainly do not know. My son used a semi-elemental diet once for about 10 days. He was lucky--usually it takes longer.

Please make a separate post to "Writer" here on the forum. She is the resident expert on enteral nutrition and can answer all your questions.

Here is a link to a study explaining a possible link to a MAP infection and onset of T1 Diabetes (and ruling out MAP as a cause of T2 diabetes). MAP is also considered by many to play a significant roll in CD, so it may stand to reason why someone might end up with both afflictions. Simply copy and past into your browser...I don't know how to hyper-link!

http://www.ann-clinmicrob.com/content/7/1/9

Another thought might be to give LDN a try. He would probably also benefit greatly from the Specific Carbohydrate Diet. Just my thoughts. Please know he's in my thoughts and prayers!
EMom
Mother to 16 year old boy diagnosed in June, 2007.
Currently taking Asacol, omega 3s, digestive enzymes, probiotics, iron, vit. C, calcium w/D3 and a good multivitamin.
Started The Maker's Diet in early September. Gradually learning/using more SCD recipes, too! (cooking challenged)


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 5/19/2008 6:43 AM (GMT -7)   

As EMom says (thanks, EMom), total enteral nutrition is an alternate treatment option for people with Crohn's who don't want to use steroids. It is particularly effective for children. Here are a couple of references:

http://www.ncbi.nlm.nih.gov/pubmed/10896064?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA&linkpos=3&log$=relatedarticles&logdbfrom=pubmed

http://www.ncbi.nlm.nih.gov/pubmed/18045244?ordinalpos=4&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

There are several types of formulas that are used for enteral nutrition, elemental, semi-elemental, and polymeric. For a child with diabetes, your best choice would probably be a polymeric formula, since you can find some with a relatively high ratio of fats to carbohydrates. But I'm not a diabetes expert, so the particular choice of formula would be best left your doctor. I hope your grandson feels better soon.

 


soakes
New Member


Date Joined Jan 2009
Total Posts : 1
   Posted 1/20/2009 2:02 PM (GMT -7)   

My 17 year old daughter has had type 1 diabetes since 2000 and was diagnosed with Crohn's disease on June.  She was in the hospital 2 weeks after diagnosis of Crohn's after starting Pentasa.  She had extremely mild Crohn's at diagnosis.  Within two weeks of being on the Pentasa, she was diagnosed with moderate Crohn's.  The medicine made her Crohn's worse, which I guess sometimes happens.  Because of her diabetes, they skipped over the steroids and put her directly on Remicade.  Unfortunately, she can't go the 8 weeks that they wanted her to, so they have bumped it to every 6 weeks.  She was admitted to the hospital on 1/13/09 with a Crohn's flair.  They gave her Remicade exactly 1 month after her last dose.  The hospital she went to which is supposed to be the best in the Northwest can't handle the fact that she has Crohn's and Diabetes.  They did everything wrong - giving her sugar water, not checking her blood sugar, letting her eat.  She ended up with a fever, high blood sugar, and fought with us about giving her any pain medication.  This is supposed to be the best hospital around and I've had two very upsetting experiences with this hospital and its staff.  The doctors didn't even talk to me until I demanded it.  I had to request a pain consult from the pain clinic and they ignored my request for 24 hours.  My daughter was suffering.  I understand that pain meds cause the bowels to slow down, but I also understand that massive stress can cause or exacerbate the flair. 

The other thing that is frustrating is the everything you are supposed to eat when you have diabetes is something that is almost always off limits or you should avoid with Crohn's.  If anyone is out there that has both these diseases and knows a great internal medicine specialists in Western Washington that has experience with both of these diseases, I would appreciate any information.  She also has hypothyroidism and asthma.  Her diabetes has been uncontrolled since diagnosis - lovely hormones during these teenager years.

What type of pain meds can be taken that work and don't hurt the GI system?  She was let out of the hospital on Friday with a blood sugar level of 363 and has been in a lot of pain with 10 oxycodone over the long weekend.  Can't get in to see anyone until Feb. 5 even though discharge notes say to see doctors within 3-5 days.  Any suggestions?


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 1/20/2009 3:39 PM (GMT -7)   
soakes said...
The other thing that is frustrating is the everything you are supposed to eat when you have diabetes is something that is almost always off limits or you should avoid with Crohn's. If anyone is out there that has both these diseases and knows a great internal medicine specialists in Western Washington that has experience with both of these diseases, I would appreciate any information. She also has hypothyroidism and asthma. Her diabetes has been uncontrolled since diagnosis - lovely hormones during these teenager years.


Welcome to the forum, soakes! I think you might be surprised about dietary recommendations for Crohn's and T1 diabetes. Check out the book "Breaking the Vicious Cycle" by Elaine Gottschall. Many here follow the Specific Carbohydrate Diet (SCD), the name she gave a diet given to her (for her daughter) by a Dr. Haas in the late 1950s. The low-carb, sugar-free, grain-free aspect of this diet would certainly keep her blood sugar even! Just a thought! I'm so sorry your daughter has to deal with both of these DDs, though!
Mom to 16 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium w/D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Incorporate Specific Carbohydrate Diet (SCD) recipes, too.


miguelblanco
Regular Member


Date Joined Dec 2007
Total Posts : 131
   Posted 1/26/2009 2:26 PM (GMT -7)   
Ah, a thread I can relate to!

I use an insulin pump to control my diabetes. The steroid-based meds really made my sugars hard to control. My sugars usually run very consistant (around 120 average) and it was hard to bring them down below 240 when on Prednisone and Entocort (even on the lowest doses.) Because of this, I went on Remicade. Bloodsugars have returned to more normal levels and I have been in pretty good health since going on it (only 3 infusions so far.)

A lot of my disease is low down in the colon/anus. I screwed around with all sorts of enemas and suppositories, tried Pentasa, none of it worked worth a darn. When it progressed into more of my GI tract, and the joint pain/swelling/arthritis finally became unbearable, I went on the Remicade. Very happy with it so far. Next infusion in 2 weeks.

Best of luck to you! That's a tough combo for such a little guy to deal with. Be on the lookout for gluten sensitivity as well with his diet. That seems to coincide with all of this too. My Celiac disease/gluten intolerance was diagnosed a couple years before the Crohn's.
Type I Diabetes- 29 yrs. (MiniMed Insulin Pump)
Celiac Disease- 8 yrs.
Crohn's Disease- (Nov. '06)
Remicade (First Infusion 11/3/08) yeah

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