New to testing/results

[Missmelx4]

Hello...

I guess I will just jump right in. I am a 43 yr old wife and mom. I have had issues with constipation since i was an infant, my Mom had to make my formula from scratch and when she started me on cereal she could only do rice because the wheat would cause me to have explosive bm's. Of course, I didn't find that information out until today. As far back as I can remember i have suffered with migraines, anxiety, depression, bowel issues, I was a tall stick growing up until I had my first child. Whenever I ate I felt sick. The Dr.'s she dragged me to see said to either limit my milk intake (yes..now I am pretty much lactose intolerant) but then she found Dr.'s that told her it was a mind over matter and that I was withholding on purpose and she needed to discipline me more.
rew up in the 70's and 80's need I say more. 

June 2014 I had become very ill and they removed my gall bladder and did a liver biopsy. The surgeon was sure I had some form of Hepatitus but all the tests and biopsy came back negative. My gall bladder was a casuality to whatever was making my liver sick (3 times the normal size and enzymes through the roof) That summer I started to develop a strange rash across my eye lids and just under my eyes. It was at times blistering and hive like. It just kept getting worse I tried everything environmentally that I could think of that could be a reason, I no longer wear makeup and it just persisted. At the end of October 2014 I was doubled over in extreme pain abdominal and intestinally. Dry heaving and felt like I was going to give birth even though I knew I wasn't pg. Got to the ER and they did every test imaginable and gave me the good drugs to calm me and the pain down and all they could say is you are constipated. I called b.s. on that and I found an internist to address my rash. She tested me for every auto immune disease and everything came back negative. The rash finally got better in February and I haven't had a flareup since.

I was diagnosed IBS 10 years ago so I figured the bowel issue was my IBS. I was able to tolerate FF milk products so I was very careful with moderating that so I wouldn't have an intestinal flare up. For the past month I have been just sick and exhausted, I went back to college which is going great...all A's but I never know if i am going to get sick. I have both nausea and loose stools and worse. There are times I barely make it to the bathroom. I can no longer tolerate even a tsp of ff sour cream or yogurt and I have to cut out all coffee because they all leave me doubled over in extreme pain and nausea. Two weeks I almost went to the ER, luckily it calmed down enough that I got right in to my physician instead. She put me on Bentl and I have phenergen, waiting for my Zofran to be approved so I can take it during the day when I have school. 

She shipped me to the Gastro Dr. because she all the tests for celiac come back negative and she doesn't think its gluten but I insisted that I can't imagine it being anything else. It all fits. I had the colonoscopy and endoscopy done today, I go for the full results in two weeks. So far this is what he put in his findings...for those of you who have been through this do these seem consistent with Celiac diagnosis? Should I wait for an official diagnosis before going gluten free, just in case they want to do other tests? I know going gluten free before tests can further askew the results for a false negative. Any advice is appreciated. I am just so tired of the pain and feeling sick n tired.

Findings:
LA Grade A reflux esophagitis (I started Prilosec a week ago)
Erythematous mucosa in the antrum
Flattened mucosa was found in the duodenum, suspicious for celiac disease. (Biopsied)
Altered vascular and congested mucosa in the descending colon (Biopsied)
Inflammation was found in the descending colon secondary to colitis. (Does this mean I HAVE Colitis? Never had a dx before?)

Sorry to be so long winded just trying to give an accurate picture.Thanks in advance for any advice you can offer. I want to cry...one because if it is what I had already suspected Celiac then its a relief but at the same time it scares me to death. Perhaps that is my anxiety talking.

~Mel

 

[Darren]

Hi Mel, just wait the 2 weeks to find out the results of the biopsy, it will let you know if you have celiac or not. If you do the good news is you CAN manage it. Seems overwhelming at first but after you learn what you need to know and make the adjustments you'll be fine. I was recently diagnosed and was totally stressed about how much you need to change things, but I assure you that now it's no big deal. I'm fortunate that I have few symptoms and minor damage so that helps, but you take what life deals you, you adapt and move forward. You CAN do it and you'll feel so much better for it. 

[squirmingitch]

Mel, I would be curious to know which tests were done for your celiac blood panel. Can you get them, post them along with the ranges for them? They may not have done a full celiac panel on you is why I'm wondering.

 

You sure sound celiac. And I hope he took 6 biopsies.

[Palvyre]

Your biopsy results appear to be consistent with Crohn's. Did you have any tests specific for that?

[cyclinglady]

Squirmingitch asked a good question.  Which celiac tests did you have?  If it were just the SCREENING TTG IgA, along with testing you for an IgA deficiency (which would make the TTG IgA test invalid), your doctor should order the rest of the celiac panel.  Especially since you have biopsy resutls that could be from celiac disease.  I say this because I tested positive on just the DGP IgA test (all others were negative), yet my biopsy results show damaged villi.  I have been on the gluten free diet for over two years and yes, I do have celiac disease.  My original symptom (anemia) has resolved.

So, check your lab tests.  Make sure the rest of the panel is ordered based on the American and British organizations for Gastroenterology (I am not making this stuff up!) 

Good luck!