New To Celiac-Please Help!

[jenn-ag]

I've never heard of Celiac's disease until last night after I left my GP office and began researching, so please be patient with me. Since the 10th of December, I've been suffering from vomiting with pain under my right rib cage that also makes it feel as if my by back is going to explode. I've felt like I have a balloon on the inside of my body being inflated all the time. When the symptoms first began, they were coupled with diarrhea, until I began having to take pain medication around the clock and became constipated. My abdomen is noticeably swollen and my symptoms are always at their worst at night, especially after eating. I've had numerous tests run that have all been returned with "non-specific" findings.

Findings: Inflammation of esophagus, stomach, intestines (with mild jejunal fold thickening), small pancreatic cyst, and both renal pelves are inflamed. There is also mild scarring of my right kidney. After having an endoscopy of my upper digestive tract, I insisted on a colonoscopy as well. Both tests came back normal with the exception of the inflammation, and the cyst was benign. My blood work has been returned with all normal findings for what was tested, and a urinalysis only showed that I have blood in my urine (everything else was normal). I have gone to a chiropractor for a suspected abdominal muscle tear with no very little improvement. But, every time he begins working in the area (pressing on the muscles) I am in so much pain I have to scream (and I didn't scream when I gave birth to my children). So now, my GP believes that it is a disease of the small intestines.

After doing a bit of research, I saw quite a bit of what I have been experiencing in Celiac's disease. I have had bumps on both elbows in previous years that turned into blisters that itched and burned, but never gave much thought to it. Since I was 19 years-old I have been so fatigued that it has had a dramatic effect on my quality of life, and was even diagnosed with Chronic Fatigue Syndrome. And finally, this is not the first time I have endured these symptoms. They seem to come and go about every three to four months, but this is the only instance that has lasted this long or been accompanied by vomiting and diarrhea.

So here are my questions:

1. Are these typical findings of Celiac's disease (inflamed digestive tract, etc.)?

2. Do biopsies that are "standard procedure" with endoscopy and colonoscopy test for Celiac's, or must I specifically request they test for it?

3. My GP is in the process of scheduling a test to look at the small intestine, but I'm thinking I need to return to him with my research since I've never mentioned the blisters on my elbow to him. So, would the blisters coupled with the other symptoms warrant a return trip to my GP before the next test is run? (just your opinion from experience)

Thanks so much for sifting through all of this! I am at my breaking point and would really appreciate any insight you may have.

Jennifer

[okieinalaska]

Hi there, I don't have much to share but was curious...

When you had your endoscopy did they take biopsies?

[jenn-ag]

Hi there, I don't have much to share but was curious...

When you had your endoscopy did they take biopsies?

Thanks for reading! Yes, they took biopsies, but I'm not certain if they took a biopsy of the intestine or not. I know they took a biopsy of the esophagus and stomach.

[GFinDC]

To test for celiac they usually take several biopsies of the small intestine and then send them to a lab for analysis. Before that (endoscopy) though the standard test would be blood tests for antibodies to gliaden, the protein in wheat.

Neither the antibodies or the endoscopy can give 100% accurate always truly correct results though. So it's good to go ahead and try the gluten-free diet after the testing is done regardless of the test results.

You do need to keep eating a full gluten diet until all the testing is complete though or the results are even less reliable.

[jenn-ag]

I'm so frustrated! I went back to my primary care and discussed the possibility of my having Celiac with him. He didn't seem opposed to my research, just said that he didn't know enough about the disease to say one way or the other, and that the symptoms of Celiac are very broad and encompass a lot of other things. He sent me to a GI specialist, and told me to ask him whether or not Celiac could cause the inflammation in my organs (he admittedly did not know).

So, I went. As soon as the GI doc walked into the room he told me that since they had done an endoscopy and colonoscopy that he had done everything he could for me. It turns out that he had not taken a biopsy of my small intestines at all, despite the CT results. Then, he told me that Celiac wouldn't cause pain. Everything I have read tells me otherwise, am I mistaken? He also made a point to disregard my question as to whether or not Celiac will cause inflammation in other organs, since he doesn't think I have anything wrong with my digestive system!

I was so frustrated that I left the GI doc's office and went straight back to my GP, who was just as frustrated as I was! So now, he is sending me "downtown"(Houston Medical Center) to be evaluated by a different doc.

Do any of you know the answer to these questions? Does Celiac cause inflammation in other organs and/or pain?

[Marlie]

It caused pain in my daughter. Before the diagnosis she had terrible stomach pains the month prior which is what landed her in the hospital. She was in alot of pain (9). So yes stomach pain can definitely be a symptom of Celiac.

A Celiac Blood Panel should include the following which you could get your primary doctor to run:

Total Serum IgA

EMA IgA

tTG Iga

DGP Iga

DGP IgG

[okieinalaska]

Pain is really the only reason I gave in and went to my doc finally. What a bunch of baloney from him.

[jenn-ag]

Thank you so much for your responses! I literally wanted to scream at him, but resisted the urge. I have an appointment Monday morning with a different GI specialist, so let's hope that he will do the testing. I'm pretty convinced that I'm on the right track with my symptoms, especially since I found out that I am also B12 deficient (after pouring over all my test results again). Again, thank you so much! I was beginning to think I was losing my mind!

[mushroom]

Here we have another victim of lack of knowledge about celiac disease!! As if we needed any more!!!

Yes, celiac can cause stomach cramping, diarrhea, constipation, pain under the rib cage, pain in the joints, tremendous migraines, pain almost anywhere. Yes, one of the primary symptoms of celiac is inflammation - in the digestive tract and, depending on the individual, practicallly anywhere in the body. Celiac can cause polycystic ovarian syndrome. Celiac can cause pancreatic inflammation/pancreatitis, and reduction in enzyme production. Celiac can cause B12 deficiency (and all manner of other kinds of nutritional deficiencies, because the gut is not absorbing nutrients properly.)

If the endoscopy does not take multiple samples which are tested by immunfluorescence . specifically for celiac disease, the GI cannot know whether or not you have it. An endoscopy performed for other reasons cannot rule out celiac. It is a disease which may, or may not, be visible to the naked eye through a scope; only the most severe cases are observable without taking biopsy samples to examine under magnification. And because the disease is patchy in nature, multiple samples need to be taken to make sure you find a damaged area. Even then there is a 20% false negative rate on the biopsy, either because you do not have celiac disease (but probably have non-celiac gluten intolerance) or because your doctor did not sample any of the affected areas.

But as others have mentioned, first you need to have the full celiac panel of blood tests run. That is the starting point of diagnosis

Let's hope that this new GI has some basic understanding of how to diagnose celiac disease. And don't be afraid to let him know that you know how to if he tries to short-circuit the process. It is your money that is paying for these things, so demand that they do it right. You shouldn't have to be telling them how to do their job

[jenn-ag]

Thank you so much! My husband and I have decided that no matter what, we are going to press the doctor on Monday for the Celiac panel. I could be dead wrong as to it being Celiac, but the bottom line is that over the past 2 months my life has been turned upside down, and there has to be a reason for that! People don't just become as sick as I am without a physiological reason behind it, and I am determined to find out what the problem is! Thanks for all of your support!

Regardless of whether this turns out to be Celiac or not (but I'm betting that it is), you all have been a lifeline for me during this very frustrating time. Just reading the postings of others has helped me understand more about the disease, as well as allowed me to find validation in their experiences. It's sad that so many people have to experience the kind of treatment that so many of us have endured from the medical community, but it is just more proof that we must be proactive in our own health, because no one else cares as much about it as you do! Again, thank you all, and I will give an update after my appointment on Monday.

[jenn-ag]

Just got out of the appointment with the 2nd GI Doc. He was very thorough, and as soon as he heard that I am B12 deficient, he ordered a full Celiac panel! I didn't even have to bring it up! He said the results will only take a couple days! Whoop!!