Overwhelmed With Little Results....need Some Support And Guidance!

[ezgoindude]

Hello everyone! First time in the celiac forum, and would be super thankful for anyone's advice or personal experience in this.

My doctor is going in circles and I'm starting to have tests taken again like he's waiting for something to fail... Here's the tests so far:

Complete metabolic panel: perfect except low vit d

Complete blood count: white and red cells effect, low platelet count.

Thyroid panel: perfect

5 hiaa urine test: perfect no tumors

C reactive test: negative.... Normal

Sedimentation rate: negative.... Normal

Tag iga test: under 2 so negative

Fecal calprotectin: 153 (abnormal, but very low range?)

Endoscopy/colonoscopy: colon and terminal ileum perfect

Stomach has chemical gas trophy at the top and my duodenum was flat by appearance yet my biopsy comes back as normal. ( doctor is confused on this one)

My symptoms are slow weight loss (20 pounds in 6 months)

Bowel movement looks odd, no urgency but it's light green/ tan/ yellowish, sometimes smells.

Sometimes little bit of oil on surface of water

Burning in my upper right ribs and especially just undery belly button sometime after eating.

Feet/ hands tingle or go numb if I'm sitting in certain positions.....

My doctor is going against his own biopsy to say I'm still reacting to something (based on what he saw in duodenum)

I've been gluten and milk free since New Years, I have energy but these other symptoms haven't slowed down. Can this be celiac? Non celiac intolerance? I've heard of fungus and parasites, what other tests or directions should I take?

This had to of been the biggest wake up call I've ever had, I always thought I had an iron gut, whoops.

[cyclinglady]

Okay, I am not a doctor not an expert of anything…..

 

How many biopsies were taken? 

 

Have you really been gluten-free?  It's such a huge learning curve.  Take a look at the Newbie thread located under the "Coping" section of this forum.  You may be still consuming small amounts of gluten via cross contamination (cc).  Yes, cc is serious issue for us.  That's why most of us, avoid eating out as much as possible.  This risk of cc is too high!  

 

An ultra sound to rule out gallbladder stones.  A HIDA scan to detect a non-functioning gallbladder.  My family is cursed with non-functioning gallbladders.  They work on and off for years until they cease working and begin to rot.  

 

It certainly sounds like you could have celiac disease, but I would imagine that you would have some relief in three months, unless you were getting gluten in your diet these past three months.  

 

Doubtful about fungus unless you were on constant rounds of antibiotics.

 

Parasites?  That's a possibility if you travel or eat anywhere on the west coast in a restaurant (ha!).  But those are really tricky to identify.  

 

Hope this helps!

[ezgoindude]

Hello Cyclinglady!

 

Thanks for the info,  my mom has been pushing thyroid/gallbladder issues as well, even if my thyroid results had already come back normal.

 

In total they took 5 biopsies, one in my stomach, one in the duodenum, two in the colon, and one in my terminal ileum.

 

stomach came back as chemical gastrophy, which he blames for either allergen or taking my proton pump inhibitor....

duodenum biopsy came back normal, yet the doc knows with his own eyes my duodenum looked flat.

 

Yea i've been gluten/dairy free since sometime in January, my energy and sleep is back, but my stool/gas/ no weight gain is bugging me! it just wont shake loose?

 

 

 

Do you personally have any foods you later found out you can't tolerate? I want to do an allergen test, but my GI doctor says its expensive and worthless. 

[cyclinglady]

Well, I don't think you had enough biopsies in your small intestine.  Let's face it.  The surface area of your intestines is the size of a tennis court!  A lot can be missed.  Maybe where the GI saw flattening, he accidentally picked a intact spot to biopsy.  Who knows? 

 

I have had food allergies forever!  The same ones run in my family (and no, those particular folks have not been tested for celiac disease yet).  I also have some recent in-tolerances to say, coconut milk that I did not know about, but noticed from observation and tested it out a few times.  No coconut milk for me!  I am allergic to tree nuts, milk proteins, eggs and weirdly, garlic.  That one gives me an instant tingling in my mouth ASAP!  I have inhalant allergies to mold and tree pollen, cats, medicines, and weeds.  I did go to an allergist for those. 

 

I have kept food journals too to help identify foods that have bothered me in the past.  Most of my allergies have calmed down and are not as severe as they were when I was young.  

 

Keep a food journal and see about testing your gallbladder.  I would not rule out celiac disease yet.  My cousin tested negative both blood and biopsy, but felt much better going gluten free.  She figured that since I had celiac disease and that her Mom had gluten issues, that she'd give it up for good.  She determined that it might have been in the early stages.  In any case, she now gets severe reactions from accidental glutenings.  

 

Has a doctor felt your thyroid?  Did you get your thyroid antibodies tested on your thyroid panel? That will confirm if you have autoimmune thyroiditis.  Does your mom have thyroiditis or the gallbladder curse? 

[ezgoindude]

Yea... I'm thinkin if the doctor is questioning his own biopsy it doesn't hurt to stay gluten free. I don't know if the thyroid panel included antibodies, I know they were looking at t4 and t3.

My mom had hormone issues after her last pregnancy, for her it's opposite with weight gain and constipation. It wasn't until she was put on testosterone and estrogen that she noticed an increase of energy and wellness.....

Yea my next appt is a month from now as I get to reintroduce foods back in my diet as an experiment lol.

I am thinking of pushing for hida, it's so often that I'm still having terrible gas and just strange stool. Not diarrhea but def normal.

You said garlic is funky for you, how is your experience with tomatoes and rice? My coworker said I should go vegetarian for a few weeks but I would have to add a lot of currently troublesome veggies back for that to be a reality

[cyclinglady]

Thyroid antibodies, if high can be either hyper or hypo thyroid. I have been both and the rest of the family is either one or the other.

Tomatoes and rice are not a problem for me. Just in case a newbie is reading this post, not all celiac patients have issues with allergies or intolerances. This most common is milk due to damage from celiac disease to the intestinal villi. This one typically resolves with healing.

I hope you find your answers!