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Why am I Still in Pain and Why Can't They Find Anything?

My journey with celiac began a year ago...I have been sick all my life and doctors just couldn't figure out why I was having such severe abdominal pain and bloating. Until last September, I just couldn't take it anymore.

I went in for an ultrasound of my gallbladder and a hida-scan. My gallbladder was not failing to the point where they normally remove it. So, we ignored the pain. Until one night, after eating dinner, I ended up in the emergency room.

My doctor decided to send me in for a colonoscopy, EGD and biopsies to check for ulcers. I was cleared of ulcers, so we went ahead and removed my gallbladder.

A week later, my biopsy results had come in and suggested we get some lab work ran to check for celiac disease.  My results came back over 100% positive.

I started the gluten-free diet after meeting with a dietician, and still have not started feeling better! In July my doctor wanted to do a Capsule Endoscopy to check for cancer and lymphomas. My insurance would not approve this without another blood test for celiac disease. When I got the results back, they were negative. My doctor explained that I have been following the diet extremely well, and we needed to rule the serious stuff out.

My insurance approved the capsule endoscopy and when the results came in, my doctor said everything looked good, but if he didn't already know that I had celiac disease there would be a couple things that he would be concerned about...I never found out what! After telling me that he would see me in a couple weeks, I decided to see another doctor. We tested my vitamin levels which were low, and I am iron deficient. I am now taking prenatal vitamins, ferrous sulfate (iron) and a probiotic to get levels back up. I also have osteoporosis at 20 years old.

We took more biopsies of my small intestine 3 weeks ago, and the doctor said that he saw no trace of celiac disease! It was normal...

So why am I still in pain and why can't they find anything?

As always, Celiac.com welcomes your comments (see below).


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17 Responses:

 
Babs

said this on
14 Oct 2013 10:52:09 AM PST
I still had a lot of pain issues after being gluten free for a year after my celiac diagnosis. I went for a consult with a nutritionist who specializes with celiac patients and worked with her to: 1) confirm I was not accidentally including gluten in my diet 2) eliminated ALL gluten free replacement foods 3) used a detailed food diary and elimination diets to figure out what else might be a problem. That third step was the key as further food intolerances were causing my pain issues. By eliminating a variety of foods I'm almost pain free. Now I'm slowly trying to add back some of the foods that caused problems in the past; it has been hit or miss but I'm fine with a really restricted diet if it means I am not in pain!

 
cathy

said this on
04 Jan 2014 9:55:35 PM PST
Eat more foods that reduce inflammation and drink herbal teas.
Licorice and Hibiscus have great affect on inflammation. I am almost pain free by reducing the inflammation foods in my diet.

 
Janet

said this on
14 Oct 2013 11:21:06 AM PST
Cheyanne,
You are not alone. So many of us are suffering and just because "they" can't "see it" doesn't mean it isn't happening. Listen to your body, be a strong advocate, never stop seeking. Some times it's more than one thing. I've just tried addressing inflammation as an additional problem and Celebrex has greatly helped, although the cost for me is not sustainable it has at least provided a clue. Good luck.

 
Amanda

said this on
14 Oct 2013 1:51:00 PM PST
Have they ruled out Crohn's Disease? I'm in a similar situation, myself. Was GF for a few years, but I'm having horrible bile malabsorption issues (from previous gallbladder surgery). Had upper and lower GI tests done a couple of weeks ago... biopsies are still out. Had to incorporate gluten into my diet for the biopsies... Now, it's not bothering me to eat it. Digging more. May do camera pill tests next. We shall see. Hope you find answers.

 
Ann B

said this on
14 Oct 2013 1:58:31 PM PST
I don't know why you are still in pain, but no celiac disease will show if you have been on a gluten free diet, since it is the gluten which causes the inflammation. If you have been nutritionally deficient for years, there may be other underlying problems. Good luck.
For others, if you are being tested for celiac, don't avoid gluten before the testing.

 
Margaret

said this on
14 Oct 2013 7:25:03 PM PST
What are you eating?

 
said this on
23 Oct 2013 6:36:05 PM PST
You may have other food allergies, besides gluten. I, for one, experience a lot of pain when I eat soy. Its very likely that you could have developed a "leaky gut" due to gluten. That means that tiny holes might have developed in your intestines (not normal!) allowing food particles to passed into your bloodstream and elsewhere. If this is the case, then you could have allergies to many different foods. This may be reversible, but first you have to heal your gut. I would recommend a "paleo" diet, as that has helped a lot of people who haven't felt good on the traditional gluten-free diet. A paleo diet (for a month, at least) will help you to eliminate all those potential food allergens, which you can then later slowly introduce back in.

I would also suggest looking for a "functional" doctor who understands these issues better than the traditional AMA doctors. I hope this helps. Feel better soon!

 
Cheryl

said this on
05 Feb 2014 5:03:27 PM PST
I don't know if the Gap Diet is the same as Paleo diet, but I know the Gap Diet is designed to help people have a healthy gut and help heal leaky gut syndrome. Google the Gap Diet for more information.

 
Derek

said this on
05 Nov 2013 9:16:41 PM PST
Check out the Low FODMAP diet. I went through everything you describe (all the tests after being diagnosed years ago as Celiac). I've been very strict in my gluten free diet and slowly the symptoms reappeared. Ran the battery of tests you described. Then a dietitian approached my Gastroenterologist with information on the Low FODMAP Diet. There is an APP for it developed by Monash University. My sensitivities appear to be onion, garlic, chickpeas etc. Anyway the diet apparently works in 3 out of 4 cases and has been found to benefit Celiac patients where the symptoms reappear. Hope this helps.

 
said this on
13 Nov 2013 6:47:32 PM PST
Hi Cheyanne,

I'm just checking in. Have you gotten any help? How are you doing? I'm sure we can find some people to help you.

 
Pat

said this on
05 Dec 2013 10:48:18 AM PST
Hi Cheyanne, I just found this blog, and hope that you have gotten some relief, too. The allergic reaction to many other foods is what was causing much pain for me. I am gluten free, but the doctor discovered reactions to corn, soy, rice, casein,tomatoes, and the list goes on and more. Change doctors if you don't get the explanation you need. I was unfortunate to trust and stay w/ a 'famous' specialist here, and suffered for over a year, he finally told my husband I was nuts and not to return to him again. We went to a different doctor then and and he performed endoscopy and colonoscopy and within a week the diagnosis of celiac was made and confirmed and I was on the way back to "normal". That was Jan. 2013. It does take time to fix the damaged intestine and to discover the right stuff. Prayers sent for you!

 
Mena

said this on
04 Jan 2014 8:54:39 AM PST
Hi, my name is Mena and I'm from Iraq , I was diagnosed with celiac disease before one and half year, and am on a GF diet but I'm still feeling bad. I feel weak I have bone pain especially in my joints. I'm in medical college 1st year and I have to leave this year because I can't study. I don't have the energy. Please I need your help.
I heard that not only a GF diet...patients with celiac need to stop eating dairy, sugar, spice, broccoli, cheese, cumin, lettuce...and many other things.

 
cathy

said this on
04 Jan 2014 9:48:26 PM PST
I was diagnosed with IBS/Chrones Disease, ulcerative colitis, diverticulitis's and was told to follow the strict diet for this illnesses.... I had no relief and could not even eat soup or Jello.
I lost 65 lbs and 8 dress sizes felt HORRIBLE.
I read up about celic disease and saw that I am a textbook CD sufferer. I changed to a gluten free diet and within days felt better. 1 1/2 months later I have stopped loosing weight and feel 100% better. The doctors were wrong with all the fancy tests I had and they never figured it out....I had to point it out.
Also if you are taking medications and have CD it will make you sick to feel relief you have to be totally medication free. Herbal teas give great relief. Try Licorices and Hibiscus tea read on other teas. They provide natural relief.. I cannot take pills of any kind.
Listen to your body, not the doctors.

 
Patty

said this on
08 Jan 2014 11:22:53 AM PST
Hi. I'm reading a book right now called "Breaking the Viscoius Cycle, Intestinal Health Through Diet" by Elaine Gottschall. It's about the "specific carbohydrate diet" and there is a whole chapter dealing with celiac disease and specifically people who continue to have problems even after going gluten free. It might be worth picking up the book. In a nutshell it says that our understanding of Celiac disease is not as thorough as we're led to believe, and the idea that it's caused by the gluten protein alone is the current hypothesis. There was research done in the 1940's to support the ides that it's starches or the interaction between starches and gluten that cause celiac. They say elimination of starches (all grains and potatoes) cures celiac. I've just finished reading the chapter and I came here to see if anyone has heard of or has experience with this. I'm kind in shock at the moment because the booked described me. I've been gluten free for a year and a half. I've experienced improvement but still have issues...cramping, gas, loose stools etc. Removing all starches seems pretty restrictive though....thoughts?

 
admin
( Author)
said this on
13 Jan 2014 11:17:00 AM PST
The claim in this book is dangerous--there is no cure for celiac disease and one must be on a lifelong GF diet.

 
Bethany Hicks

said this on
23 Jan 2014 9:37:14 AM PST
I am so sorry to hear that you're still in pain. Your story sounds very familiar to mine. After being completely gluten free for about 8 months, I was still in pain. Someone suggested that I eliminate dairy. So, I tried that for 1 month and my symptoms went away. The thing is dieticians, doctors, nutritionists, they don't always know the answer to all your questions and the way that this disease works. Obviously, just being on a gluten free diet is not working for you. In addition, you need to HEAL the intestinal lining of your gut. If you are sensitive to other foods or have leaky gut which many with celiac disease and other GI issues have, you need to focus on healing your gut with anti-inflammatory foods like green leafy vegetables, fruits and limit sugar, GF processed foods and dairy. It could take years to completely heal and be able to slowly put these things back into your diet, but it is totally worth having your life back. You are way too young to be suffering like this! But, YOU need to take control and educate yourself so that you can be your own best doctor and advocate!

 
Lori

said this on
31 Jan 2014 12:47:33 PM PST
Try eliminating all grain from your diet for a while. Also, make sure you are getting enough magnesium. Food is so depleted of it now that you need to find ways to supplement. It plays a very important part of everyday health but it is usually overlooked. I take burdock root daily to clean my blood and rid my body of toxins. You might just need to find a way to cleanse your body and start fresh. Going grain free is a start. Good luck!




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