Newbie - Advise needed please

[Rox]

Hi All,

I’m so glad I found this site

I’m a 33yr old female from Cape Town, South Africa and I was diagnosed with LC in June. I started having stomach problems January this year, with flare ups of heavy D which tapered down to barely manageable D in between. After numerous GP and then GI specialist visits, a colonoscopy was done 20 June and the biopsy confirmed LC. The specialist also noted that a section of my colon looks like ‘crazy paving’ (something he had never seen before) and that there is a lot of mucous in my colon. I have been on Entocort for just over 2 months now and it has definitely helped get the D under control, with the only 2 flare ups since I started Entocort and they were less urgent and lasted much shorter than before. While my stomach has not returned to normal, it is a vast improvement to what it was. Yet I still have loose stools a few times daily which are ‘slimy’ from mucous, along with a general discomfort and ‘bubbling gas’ on my left side that doesn’t go away. Even the car seat safety belt is too much pressure across my stomach and creates discomfort.

I’ve been tested for gluten sensitivity and Celiac disease and these have come back negative and I have not noticed any link yet between gluten products and my stomach flaring up. Some foods I do know to avoid, especially high fat/oil foods, certain veggies as well as spicy foods. These are a definite no-no. I’ve always been mildly lactose intolerant, so I know to avoid certain dairy products as well. Overall, I eat a pretty bland diet now and that seems to have helped stabilize my stomach along with the Entocort. My concern is that even though I have a good appetite most of the time and my stomach has calmed down, I am still losing weight and have now dropped 17kgs since Jan (5kgs in the last 2 months alone) and I really can’t afford to lose more weight. I now weigh 53kgs and I’m 5ft5 in height, the very bottom level of the ideal BMI for my height. My energy levels are virtually non-existent and the shortest bit of physical exertion leaves me exhausted with muscles aching like I just had a gym workout. This has all affected my life quite considerably because I’m usually a very active person and it is starting to seriously interfere with my job as well. Some days, even though my stomach is ‘fine’, I wake up feeling like a zombie with a brain cloud that takes a day or two to clear. While the tests and my own body’s reaction currently does not show a link to gluten, do you think I should try the gluten free diet anyway and see if that brings some relief?

I am seeing my GI specialist again tomorrow, as the weight loss/lack of energy is starting to freak me out a bit. Any tips or advise would be greatly appreciated, as some days I feel like I’m losing my mind

Thanks so much
Roxanne

[tex]

Hi Roxanne,

Welcome to our Internet family. It's common for many of us to not notice any symptom changes when we eat gluten because the half-life of the anti-gliadin antibodies associated with gluten sensitivity have a half-life of 120 days. That makes gluten sensitivity a long-term reaction. I couldn't tell any difference when I ate gluten either, as long as I was continuing to eat it. Nor could I detect any other food sensitivity problems, because gluten (anti-gliadin) antibodies dominated my immune system. But after I had totally avoided it (even in trace amounts) for at least several months, then I could begin to notice some differences when I ate certain foods. I have been in remission for over 11 years now, and I have never taken any medications to control the disease.

It is very uncommon for anyone to have food sensitivities to other foods unless they are sensitive to gluten, initially. This is because gluten causes increased intestinal permeability that allows partially digested food peptides to pass into the bloodstream, and those peptides provoke the immune system so that it begins to produce antibodies against certain of these other foods, also.

And while everyone who has enteritis (intestinal inflammation) will be lactose-intolerant until the inflammation is resolved, lactose is only a minor problem for us. It's the primary protein in all dairy products (casein) that causes our immune system to produce antibodies (anti-casein antibodies). We lose the ability to properly digest and absorb fats (and oils) because the inflammation in our intestines compromises our digestive process so that many foods cannot be digested properly. When these partially-digested foods pass into the colon, bacteria ferment them, producing gas, bloating, cramps, and D.

Because we are unable to digest certain foods properly, we cannot absorb the nutrients from partially-digested food, and this results in a malabsorption problem that causes many of us to lose a lot of weight. To make matters worse, our immune system uses most of our available energy unsuccessfully trying to fight the inflammation in our intestines. This is why we are exhausted most of the time, until we get our symptoms under control. The reason why the immune system is unsuccessful is because the inflammation is regenerated faster than our immune system can repair the damage, as long as we continue to eat any foods that perpetuate the inflammation. The solution is to stop eating all foods that cause our immune system to produce antibodies. In almost 100 % of cases, that means that gluten must also be avoided, because it is the number 1 cause of continuing inflammation for MC patients.

Most of us are not gluten-sensitive to begin with, but when the genes that predispose to LC are triggered, the genes that predispose to gluten sensitivity are also triggered. The primitive tests used by doctors to detect celiac disease will not detect the type of gluten sensitivity that most of us have with MC. Those tests are so insensitive that they will only detect gluten sensitivity for those of us who also have fully-developed celiac disease, and it takes years for the damage to become severe enough that the tests will detect celic disease, even if we have it. Most of us do not have celiac disease, but we are just as sensitive to gluten as any celiac.

Before I changed my diet, I felt the same way that you described — I would feel as though I had been hit by a truck, and the brain fog was so bad that I couldn't think clearly. Those are symptoms of untreated gluten sensitivity.

It is almost guaranteed that your doctors will deny that you are sensitive to gluten, or that diet has anything to do with treating LC, but that's because they were trained that way in med school, and that's why they are unable to successfully treat the disease. They prescribe budesionide (Entocort), and when the patient is weaned off the medication, a relapse of symptoms almost always occurs. The doctor will act surprised and usually either prescribe something much stronger (and more risky) or tell the patient that there is nothing more they can do to help. The only way to stop the symptoms permanently is to change the diet so that the inflammation is no longer being generated.

Yes, if I were in your situation I would definitely stop eating gluten. Cutting gluten out of your diet will be your first step toward actually getting your life back again. But please don't expect overnight success. It takes months to get the anti-gliadin antibodies down to a level where the intestines can begin to actually heal. You may be able to notice improvement much sooner, but please don't be discouraged if that doesn't happen for a while. We are all different, and we all have different treatment response times.

Again, welcome aboard, and please feel free to ask anything.

Tex

[Erica P-G]

Welcome Roxanne,

It has taken me 4 months to feel better (I'm not well yet by any means), and I have had many ups and downs during that time. I can say the brain fog is much better, it comes and goes but for the most part I am good.

If you are interested in my journey there is a post at the top of the Main Message board called "Need Input I'm not going to get from Dr.", it may look rather long but my journey seems to follow a lot of what most go thru in the beginning stages after learning of their diagnoses.

Tale care, be sure to asks lots of questions
Erica

[Rox]

Tex,

Thank you so much for taking the time to explain everything to me, I really do appreciate it. Your reply has put everything I have been wondering about gluten sensitivity into one message and it does make much more sense now as to why I am feeling like I am. I will definitely be cutting out gluten going forward, irrespective of what my specialist says. Again, thank you!

Erica,
Thank you for your support, I will be following your journey for more insight. Just knowing that I am not alone in this and not losing the plot is a huge relief for me.

Onwards and upwards, we will beat this!!!