Crohns or colitis....every doctor has a different opinion

My daughter is now 16 and was diagnosed with crohns and/or ulcerative colitis 2 years ago. Needless to say its been an incredibly difficult experience for her at the prime of her teenage years. We've been to all the big hospitals, Children's, Johns Hopkins, Georgetown and now INOVA and seem to get a slightly different diagnosis each time. It seems that they are only seeing the disease in the colon which would lead them to believe colotis and she also suffered from a liver disease called primary schlerosing colangitis (usually tied to colitis). The doctor at Hopkins tried a few things and then Remicaid and my daughter had a severe reaction and they had to inject steroids she could breath. The doctor's answer at that point was to just do surgery. I wasn't ready to agree to that knowing that all options had not been exhausted. At one point she was on 24 pills a day to manage it and ended up in the hospital for a week. Dehydrated, bleeding, anemic and with a 102 fever. The third doctor seemed convinced that it was Crohns or maybe Crohns/colitis. To me that just meant that they just didn't know. Her present doctor is back to the diagnosis of colitis believing that since her father had the disease and since she has the liver disease that colitis is more probable. It' just been an emotional roller coaster. I just don't want the damage to continue.

I've been doing a lot of reading about celiac lately. No doctor ever really brought this up. I took her to have her tested for any food allergies, but did not know about Celiac at the time. None of the doctors ever even seem to want to look into food allergies, supplements, nutrition or any of the other things that seem to me to be things that could be permanently aggravating or creating this condition.

Has anyone else had any luck combining gluten free diet with meds to try to improve symptoms?. I'm really getting desperate. My daughter has finally gotten off of a long haul of steroids and now doesn't want to eat at all since she always feel sick when she does. She's dropped 14 lbs and I'm concerned that now she is getting malnourished. She sleeps all the time, breaks down a lot and is just frustrated and overwhelmed after 2 years of no real relief. Has anyone else had doctors constantly go back and forth with no absolute diagnosis? I feel like all of this medication just can't be good for her growing body and sometimes I just want to stop all the immunosuppresants and just let her body heal.
Any guidance would be so appreciated.

Her meds now are:
Humira 1x week
Methotrexate 10 pills a week
Xifaxan 400 mg daily
I also put her on probiotics and some omega oils

I guess the biopsy results came back with indeterminate colitis, meaning that they couldn't tell if it was ulcerative colitis or crohn's causing the inflammation. That is usually the best way to tell between the two. Folks with celiac usually have some irritation in the small intestine. It is hard to distinguish between UC and Crohn's because the presentation is so similar. Seeing the disease only in the colon, and if it is all through the colon, and it isn't patchy, is an indication of UC. However, these are all generalizations and are not 100% accurate in all cases. So the best you can do is take all the evidence in front of you, and make the best call from that.

Another data point you can gather is from a prometheus labs test - for ASCA and ANCA antibodies. I believe that test can help distinguish between UC and crohn's. Again, not 100%, but if you put it together with the other findings, perhaps it will help. Please ask your GI to order the test to see if they can use it to distinguish between the two.

Also, I do believe that UC has a higher risk of PSC than crohn's disease. I'm so sorry you are going through so much. Also, sometimes, when medications really don't help, surgery is sometimes needed - and if she actually does have UC, removing the colon will mean the end of UC. Then, you can just deal with PSC and hopefully get that managed.

Hang in there, and hope you and your daughter find some relief soon.

(((Hugs)))
PV

Diet can be a useful way to control symptoms of Crohn's. It does take a lot of work to make it happen though. Several people here have had good results from using either a gluten free diet or the SCD plan in conjunction with their meds and some have had results from the diet alone, often because they can't tolerate any available meds. The diets don't work for everyone, but neither does anything work 100% for everyone. I am using the SCD plan and have had good results. I tolerate some things that are not strictly allowed and I don't tolerate some things that are allowed (Celery), and most people have individual intolerances that they have to identify on their own. For some info on SCD, see: http://www.pecanbread.com/

As far as all the info I've read on removing gluten from ones' diet it seems to be perfectly safe....

Some people, such as those who are sensitive to gluten, should adhere to a gluten free diet. Many individuals who follow the diet do so because of medical reasons such as those with Coeliac disease or dermatitis herpetiformis. Yet others may choose to follow the diet for personal reasons. Whatever the reason, the ultimate goal is to remove gluten from your diet.

A gluten free diet is one that avoids all foods containing wheat, rye, barley and oats. It is sometimes difficult to determine which foods are allowed on the diet as well as determining if a product contains gluten only by its name.

Obvious sources of gluten are items made from wheat, rye, oats and barley. Foods can also contain less obvious sources such as soy sauce, thickeners, starches, battered foods, crumbs, pastries, stuffings, canned or frozen vegetables in sauces, flavored tunas, meat pies, frozen dinners, tofu, soups, pasta, pizza, malted milk, ice cream, cheese mixtures, mustards, salad dressings, pickles, and BBQ.

Items that are safe to eat include fresh, frozen or canned vegetables with no sauce, fruit and vegetable juices, dried beans, chickpeas, lentils, split peas, nuts, seeds, peanut butter, fresh or smoked meats, fresh fruits, canned and frozen meats without sauce, bacon, ham, eggs, butter, margarine, oil, milk, cream, buttermilk, vinegar, tomato paste, tahini, gelatin, syrup, jam, honey, herbs, spices, water, tea, coffee, soft drinks, wine, sherry, whisky, bourbon, vodka, rum, vermouth, tequila, and items labels as gluten free.

It is important to read the food labels for evidence of gluten. Many manufacturers are now making “gluten free” items.

If you are unsure whether a particular food is allowed, check with The Vegetarian Society or The Coeliac Society. Both societies keep an undated list of gluten free foods on their websites.

How It Works
The best way to manage gluten intolerance is with a gluten free diet. Gluten is a protein contained in grains such as wheat, rye, oats and barley. A diet containing no gluten allows the small intestines to heal. After recovery, the intestines can then assist in normal absorption of nutrients as waste passes through it. This is essential for the body to obtain all the vital nutrients it needs to sustain itself.

Benefits
A gluten free diet significantly helps those diagnosed with Coeliac disease. Individuals with Coeliac disease are sensitive to gluten due to gluten damaging the lining of the small intestines. The damage affects the absorption of food and causes weight loss, diarrhea, and iron deficiencies.

Many studies have found that a gluten free diet significantly decreases allergy symptoms among children.

Side Effects
A 1998 paper by Dr. Patricia Kane proposed that an excess of gluten had a significant link to autism in children. This study indicates the importance of gluten free or low gluten diet in children.

A gluten free diet is no doubt one of the most difficult diets to accept. The majority of the people partaking of a gluten-free diet are doing so for medical reasons. The best way to help you stay on this diet is ask for help from friends or family members and to seek assistance from a support group. Support groups offer a wealth of information and encouragement to help you manage your diet.


:)