Celiac Disease-Follow up with the Gastroenterologist

I was diagnosed with Celiac disease in August 2009.

What is Celiac Disease?

 

Gluten is comprised of a protein called Gliadin, which is found in Wheat, Rye, Oats and Barley. In certain people, this protein is seen as an invader by the body and the body’s own defence mechanism attack it. The area under attack is the villi, the small finger like projections in the small intestine, where absorption of nutrients takes place. This is called Celiac Disease. The only but highly successful solution to Coeliac disease, is to follow a completely gluten free diet.

In Coeliac Disease, there is an abnormal immune reaction, known as an Autoimmune reaction, where the body sees the proteins found in gluten as a foreign invader.  The area of the body that is attacked is the villi or finger like protrusions that make up the small intestine. This is the area of the colon where the absorption of all the food we eat is takes place and nutrients are transported to the blood stream for use in the body. In Coeliac disease, these villi atrophy and cannot properly work. Therefore, no matter how much food is eaten, the body cannot properly absorb it and this leads to malnutrition.

Symptoms include:

  • Digestive complaints such as

abdominal bloating and pain,chronic diarrhoea,vomiting and nausea, constipation,pale, foul-smelling, or fatty stool (due to the mal-absorbed foods)

Other symptoms can include

  • Weight loss
  • unexplained iron-deficiency anemia
  • bone or joint pain
  • bone loss or osteoporosis
  • depression or anxiety
  • tingling numbness in the hands and feet (known as neuropathy)
  • arthritis
  • seizures
  • fatigue
  • missed menstrual periods
  • infertility or recurrent miscarriage
  • dermatitis herpetiformis (A skin disorder with eczema like lesions that occurs in about 20% of Coeliac patients).

The diagnosis is made by blood tests, which determine if there are the antibodies in the body to gliadin (gluten) and then a gastroscopy, in which a small camera can see into the small intestine and a biopsy is made to confirm diagnosis. The three blood tests I had are called Tissue Transglutaminase (TTG) IgA, the reference range is 0-10, mine was >100 and the second one was Tissue Transglutaminase (TTg) IgG, the reference is between 0-10, mine was 21 and the third one was Endomysium Anti-IgA and it was Positive. [i]

[i] South African lab reference ranges.

The doctor that I saw then, said that I needed to stay on a gluten free diet for life and never needed to come and see him again!

Follow up with the Gastro

I now know that this is not the usual recommended advice. Rather a year after going a gluten free diet, it is advisable to have a follow up g-scope and re-biopsy the lining of the small intestine to make sure that the villi are starting to regrow, so that absorption can take place. The problem is that if you don’t have that follow up, there is no baseline from which to assess progress, if you do have a problem further down the line.

After having been AIP for quite a long time, I was still struggling with my gut. Especially after doing a chelation protocol ( for heavy metals), it never went back to being quite right. I had daily cramp, diarrhoea and was losing more and more weight. Despite having such a restrictive diet, my stomach not being right and not feeling well, was incredibly frustrating.

In June 2016 ( 7 years after diagnosis), I went to see the Gastroenterologist who said that she needed to do both a g-scope (gastroscope-the top end) and c-scope (colonoscopy-the bottom end)) and to take biopsies all along my small and large intestine, so that she could see what was going on. She was worried that I might have Intestinal Bowel Disease (IBD), another autoimmune disease, that presents as either Crohn’s or Ulcerative Colitis. The other concern she had was that having been only diagnosed with Celiac at age 28, I was effectively ‘non-compliant’ with a gluten free diet for so many years, that it predisposed me to intestinal lymphomas. Also she tested my antibodies to gluten, to check that it wasn’t a Celiac flare up and that I was being exposed to gluten somehow.

I went for the procedure and after a few anxious days and some awful discomfort from the biopsies, she phoned to tell me that everything was completely clear. There was no sign of anything in any of the biopsies.

She also said I had growth of villi, which was a really good sign and my gluten antibodies were negative. Although, obviously I felt immense relief, in a small way I was disappointed as it didn’t help explain my continued symptoms. She said this was likely due to IBS. Wow, I had heard that all before…

As usual, I did some more research myself. Now that I had ruled out all serious disorders and possibilities, I knew I had to look for other clues. The one thing that kept coming up was something called SIBO, which stands for Small Intestinal Bacterial Overgrowth. SIBO is often common in patients with Celiac. It is one of the most overlooked, but common causes of IBS. SIBO is defined as an increase in the number of bacteria, and/or changes in the types of bacteria present in the small bowel that normally reside in the large bowel.

Interestingly the one thing about SIBO is that diet alone is often not enough to treat it. I spoke to my Functional Medicine Doctor about it and I started on a treatment protocol. I had nothing to lose and I had to try it. It was antibiotics for five days, anti-fungals for five days, and then you rebuild the micro-biome, by taking probiotics, l-glutamine, digestive enzymes, Vitamin A and high dose omega 3.

Two doses on the antibiotic and I no longer had diarrhoea for the first time in months. Two days in and I felt so much better. It improved my mood and my overall sense of wellbeing. Let’s not forget the gut isn’t called the ‘second brain’ for nothing! It was unbelievable that an overgrowth of bacteria that I probably had had for a long time, could make me so awful and now finally I had some solution. I have read that often repeated courses are required as it can sometimes be stubborn and difficult to get rid of; but at least I have plan now, if these symptoms recur.

I have read so often that if you are doing everything right on the AIP and you improve and then start to be ill again, despite everything you are doing, you should consider co-infections and was it accurate for me.

Update: The problem with SIBO is that can often recur. Since then, with the help of a new Fucional Medicine doctor, I discovered saccharomyces boulardii, a yeast that is very helpful in treating SIBO as well as candida. This product has been increibly helpful in treating any recurrent gut issues that I have.

If you want to know more about me and my story, you can read more about me in my book!

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