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Dr's Can't Figure Me Out

girlulu

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girlulu Newbie
girlulu
Posted

I am so grateful to find this forum. I don't know why I didn't post years ago. I'll try to be brief and to the point but I would love some feedback:

 

9 years ago had blood and diarrhea which led me to have many tests including a colonoscopy. The only thing wrong with me was ulcers (a few not a lot) and inflammation in my ileum. I tested negative for IBD, Crohns and many other diseases. I had an endoscopy that showed "no signs of celiac disease". I ook a round of antibiotics and I felt better. I assumed those ulcers had gone away. All the dr's said I was a strange case and that I am supposed to have Crohn's disease or something and I just felt like - I felt better so time to move on.

 

MY ENTIRE LIFE I have had terrible fatigue when I do too much. If I travel and have meetings I cannot wait to lie in bed and have to sometimes stay in bed for days.

 

Over the years I have had some cramping when I go to the bathroom here and there and some diarrhea. I noticed more and more I would feel fatigue after I ate too much after a party, etc.

 

A year ago I realized gluten could be the problem. A few months after I stopped eating gluten and started on a paleo diet I started feeling the best I have ever felt in my life. So..now, when I eat gluten (on accident! I am strict) I have a horrific reaction of uncontrollable diarrhea. Unfortunately I was not careful enough in January on a business trip and had a few setbacks.

 

My mother had what dr's called "IBS" the last 10 years of her life (of course I now think she passed something on to me and she didn't have IBS but a gluten related issue)

 

It took a month or so to get my body back to healthy from my January setback with my bowel movements but they are super healthy and textbook for how you should be eliminating (gosh this is so gross but it's necessary to discuss). I feel great and my fatigue is 90% better.

 

Two weeks ago because I turned 50 I had a colonoscopy. They found "extreme inflammation in my ileum"!!!!! I have no symptoms. I guess I have minor, dull pain here and there in my belly when I'm digesting but now I take digestive enzymes and that seems to help. I also get bloated from time to time. I am doing CrossFIt and am having a hard time losing some weight.

 

I had genetic testing and have DQA5 and DQB3 if that makes sense to anyone. One dr said that means I could have celiac one says no.

 

My GI doc said nothing adds up and he wanted all those tests again like the pill cam and I just feel like they'll all be normal again. He said he's never seen a case like mine in his 40 years of practice! He said we may need to discuss me going on Humira. Uh, that would be a never. That does not make sense to me. I decided to get a 2nd opinion from a Dr at Cedars in LA.

 

So, thanks for reading...my questions are - could I still have Celiac? Do celiac patients often find inflammation in their ileum?  I actually don't care if it has a label, it's clearly gluten intolerance of some sort...couldn't it just be that my ileum has been irritated by gluten and now that I've cut it out I'm on my way to healing the inflammation?

 

THANK YOU FOR ANY FEEDBACK!!!!!

 

 

 

 

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cyclinglady Grand Master
cyclinglady
Posted

Did you actually have any celiac blood tests?  During the endoscopy how many biopsies were taken?  Not sure about the genes.  They are not the most common for celiac disease however, there is a small percentage who do not have the normal "celiac genes".

girlulu Newbie
girlulu
Posted
  • Author

OK, I can't see that I had a blood test back then for Celiac. They all look like basic blood panels. As far as biopsies...it says this:

 

Distal Duodenum, biopsy

Diagnostic features of celiac not seen

 

ONE biopsy was taken from that region measuring 0.5 x 0.3.x 0.3 all imbeded -1

 

Thanks!

cyclinglady Grand Master
cyclinglady
Posted

Visually, nothing was noted on my endoscopy.  Sample biopsies taken revealed a Marsh Stage IIIB which is moderate to severe villi damage.  Celiac savvy GI doctors usually obtain the recommended six biopsies.  The small intestine is vast -- the size of a tennis court.  So, it's easy to miss a damage area.  One biopsy is not enough!   :(

 

So, you can not rule out celiac disease.  Here's the bad news.  Because  you have been pretty much gluten free with the exception of the occasional glutening, celiac blood tests will not detect any antibodies.  You would have to go back on gluten daily 1/2 slice bread daily for 12 weeks.  It's called a gluten challenge.  

 

Here's a link regarding testing from the University of Chicago, a leading researcher in celiac disease:

 

Open Original Shared Link

 

It is good to have an official diagnosis.  It is genetic and family members can get testing more easily even if symptom free.  Easier to get bone scans prior to fractures.  Stuff like that. 

 

Or.....you can continue to remain gluten free.  Make sure you are really gluten free.  Check out our Newbie 101 section under coping.  It contains excellent advice!  

 

I wish you well!  

girlulu Newbie
girlulu
Posted
  • Author

Thank you so much for taking the time....I knew that about not being able to be blood tested because I'm gluten free but I don't feel I want to go back to eating it...even a half slice of bread. I just want to know 2 things and I will keep going the way I'm going....

 

1. Can celiac disease cause ileitis?

2. If you go gluten-free for a couple years can your ileum heal, even a little?

 

Thanks!

girlulu Newbie
girlulu
Posted
  • Author

And, thanks for the newbie 101 link but once I realized that I couldn't eat gluten I saw a nutritionist. I basically don't eat foods in a package. I eat organic/grass fed meats, eggs, nuts, lots of veggies and some fruit. I don't go near Gluten free cookies, Gluten free bread, etc. If I am at someone's house for dinner I am very clear before I get there that I will get sick if I eat gluten and even soy sauce or the wrong spice and I'll get sick. Just last night...in a friend's kitchen they were so nice and understanding they called the store that they got the sausages from to confirm.

 

I do a lot of road trips for work so I bring a cooler with me in the car. I also bring a burner and pans and cook in my room as I stay in hotels a lot on the road. You can't have the hotel complimentary breakfast so I make sure there's a fridge and bring all my own food.

 

I did mess up though when I was across the country. I was working trade shows and so insanely tired after...some restaurants in Atlanta just didn't know enough about it and I took a few bad chances and lost. I will have to figure that out next year when I have to go again but I can't let that happen again. I don't always get to choose the restaurants we have meals.

 

So, thanks.....but I thought I'd share the degree that I try to stay gluten-free!

cyclinglady Grand Master
cyclinglady
Posted

Inflammation of the small intestines can be caused by many things, but if it is related to celiac disease and you maintain a gluten free diet, you should expect intestinal healing.  

 

I was just reading an article today about celiac disease.  Many folks still have damage after two years after diagnosis.  Most of this attributed to not adhering to the diet.  One glutening can set you back for a couple of weeks. Add multiple glutenings throughout a year and healing is going to be delayed.  Remember, this is an autoimmune disorder -- not an allergy.  But,  it sounds like you've done a great job avoiding gluten.  

 

Personally, it has taken two years of being very careful!.  I can recall less than a handful of glutenings (maybe once in Europe and one or two times while visiting my folks while eating out).  I am crazy about avoiding restaurants.   My husband is also gluten free (14 years)  and is more willing to take risks.  Maybe it's because he has been gluten free longer and sustained less damage than me.  Breaking bones really has impacted my life.  I love being active!  

 

You probably need more time.   I have really learned to be patient.  

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girlulu Newbie
girlulu
Posted
  • Author

Your information and knowledge has made my day. I know it's what I have and now I know I will heal. Thanks ever so much!!!!!!!!!!!!

girlulu Newbie
girlulu
Posted
  • Author

One more thing...here is what I do not understand. Why do my GI dr's look at me like I have 3 heads? I have inflammation in my ileum but no chron's and no IBD. The last one asked if I had a dog (no, I don't). They didn't connect the gluten intolerance nor even mention celiac. Is my issue normally not related to celiac? I would think that would be on their checklist!

 

And, do you think it's ok to have one or two glasses of wine a week? (please say yes, please say yes) That would be the saddest thing for me to give up. I barely drink but I do enjoy when I have a glass or two.

 

Thanks!

cyclinglady Grand Master
cyclinglady
Posted

Yes, drink wine! As long as it is not bothering your gut!

This is sad, but true, that many doctors think that only kids get celiac disease and that the classic symptoms of diarrhea, vomiting, extended belly, and failure to thrive are the only symptoms of celiac disease.

Most of us were sick for years before finding a celiac savvy doctor or researching on Dr. Google. I used to take my husband with me to my doctor's appointments just so I would have an ally to confirm that my symptoms "were not in my head". You can check out the Patient Celiac blog which is written by a Ped Doctor who has celiac disease. Jebby sometimes posts here. Anyway, she has stated that celiac disease is barely mentioned in medical school. She was sick for years and no one was able to help her. Maybe education (that is why she blogs) is the best solution for helping others get an earlier diagnosis.

Back to my chores! I have International guests coming for dinner tomorrow night. A gluten-free meal, of course!

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