My Story and Intro

Chrystabel · Joined: 13 Jan 2008 Posts: 4

Someone told me about this forum today and so I'm here and wondering what to do.

I have been suffering from immune related problems for quite some time now. When I was a child I was often ill with strep throat and had a bit of depression. However, my early twenties were a good time and I felt generally well. In my mid-twenties I married and we had our first two children.

After the birth of our second child was when I started to feel sick all of the time. Our baby was only two months old when I would bloat and had colitis so bad it felt like there were razor blades in my intestines. I was also SO fatigued and my thoughts were: "so this is what motherhood feels like-always tired and achy?" I remember feeling like life was blunted and I stumbled around in a fog. I was overweight and couldn't seem to lose weight no matter how much dieting I did. I was prescribed broad spectrum antibiotics for a stubborn bladder infection that wouldn't go away. These spasms and infections continued on and off for many months and I went to my GP many times and she basically told me the pain in my gut was all in my head.

It got to the point that I couldn't go shopping for food without spending at least 20 minutes in the toilet because of the terrible spasms, diahrhea and pain. Not to get to graphic-but I couldn't even experience intimacy because of the bloating and intestinal pain. I decided to try veganism to see if that would help. It did. Some of my worst cramping would come after eating dairy products and when I cut out dairy I felt a lot better. Finally my GP sent me to a Gastro specialist. They did a colonoscopy and found a lesion but there were no answers. When I asked about the lesion the Gastro doc said: "anything could have caused it-antibiotics, a parasite, who knows. It looks like its healing so keep going with your new vegan diet and you should be fine." He did not do any bloodwork on me.

Fast forward 10 months: I was pregnant with our third child and felt okay until I came down with a horrible rash that wouldn't go away. It itched all of the time and my midwife and OBGYN couldn't figure out what it was. They gave me cortisone and after three weeks it subsided. The rest of the pregnancy I was okay but I had given up veganism and was eating a more mainstream american diet.

Then it happened-three months after the birth of our third child I came down with a bad "cold". It wasn't a cold-it was group A strep pneumonia-but I didn't know that. After going to an urgent care the resident told me I did indeed have a "cold" but 36 hours later I was in the E.R. with septic shock and a definite diagnosis of pneumonia. I survived the septic shock (a miracle) and had two thoracic surgeries to empty my lungs of all the pus. I was 30 years old. A top immunologist at the hospital came to see me and refused to run blood tests because I don't have diabetes and "since you survived the septic shock your immune system must be okay." Group A strep pneumonia is very rare and no "normal" 30 year old woman should get it (usually only immuncompromised or drug addict types get this).

During the aftermath of this event I tried to pick up the pieces of my life. I was sick all of the time. In two years I got pneumonia four times and had 2 super ear and sinus infections. I was always tired (especially in the afternoon) and chronically fatigued and cranky. My teeth were constantly sensitive, I had strange skin rashes on my hands, chronic cold hands and feet, and ever present bloat and gas. I knew my problems must be linked to nutrition so I ate a lot of whole wheat, kamut, rye and spelt grains (we were living in Germany at the time). I continued to be bloated and the intestinal cramps were beginning to return.

But a very interesting thing happened-my father was diagnosed with prostate cancer and he decided to try to beat it with nutrition. He began implementing some of the nutritional advice found in Udo Erasmus' book Fats that Kill, Fats that Heal and cut out all forms of sugar. He suggested I cut out sugar too. I didn't-and I continued to eat all of my healthy whole grains. But one day I was so bloated, my intestines so cramped and my diahrhea so pronounced that I couldn't stand it. I got on the internet and diagnosed myself with Candida Albicans overgrowth. One of the tenets of the Anti-Candida diet is giving up gluten as well as refined sugar.

So, I gave up all sugar and gluten cold turkey before last Easter and I've been doing really well. No colds, I've lost a lot of weight and I feel a lot better in general. But when I went to my parents Christmas party I decided to have "just one" sugar free whole wheat cookie. Big mistake. I was sick to my stomach, broke out in a rash all over my face, and spent a few hours running to the toilet.

Also, I now have a weird small rash on my leg. Its a patch of really itchy skin and it doesn't go away.

So, is it possible I have celiac and this is the real reason for my immune issues? Should I bother getting tested? I have been on a basically non-gluten diet for 9 months now and I wonder if it is even worth it to get a blood test done. I don't want to start eating gluten again because it makes my stomach hurt, gives me rashes, diahrhea, headaches, etc. Is a diagnosis even necessary? I worry about my children having this as well. Any thoughts?

Thanks for reading this-I know its long. I really hope I have finally found the source of my health problems.

aklap · Joined: 02 Oct 2004 Posts: 8794 Location: WI, USA

Hi Chrystabel,

Welcome to the board. It sounds like you've had quite the rocky path to follow - sorry to hear that. Many of your symptoms [sx's] are consistent with CD.

As you suspected, getting testing done after being GF for 9 months would require you to go back on gluten. In order for the testing to be as accurate as possible, you must be consuming gluten. Some people are willing to do this, some are not. We've had several discussions about that. Basically, it's a matter of personal choice. Some people can have a hard with compliance if they don't have an official diagnosis (dx).

Compelling reason to dx by biopsy Biopsy or Not to Bipsy - That is the question.
Suspect CD, is dx worth it? - This discusses the value of getting an offical diagnosis.

Another option for testing is Enterolab. They report that they can detect the presence of gluten in your system [gut] for up to 1 to 2 years AFTER your last gluten ingestion. Be aware, Enterolab is widely accepted by mainstream medicine - yet. Dr. Fine has not published any of his findings for peer review, so there are many skeptics. However there are several docs that do find credibility in Enterlabs testing.

https://www.enterolab.com/StaticPages/Frame_TestToOrder.htm

Could gluten be at the root of all your auto-immune issues? Yes, it's possible. It becomes the "Which came 1st: chicken or the egg'.

CD can be acquired as a child, go into remission during teen and young adult years, then make itself known in the 20's, 30's, 40's.

Typically there is a trigger that sets your body off. Infection, illness, surgery, pregnancy, some say stress. Then there's also Leaky Gut which can set off your immune system.

Judging by the positive results of your dietary trials, it sounds like you're on the right track! Keep reading, keep learning, keep asking questions!
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

ali · Joined: 09 Jan 2008 Posts: 60 Location: NC

Welcome to the board! I'm new here, too, and still learning, so I don't have any advice to offer... But you have my support! It's hard enough being a mom - let alone feeling ill while trying to enjoy your kiddos!

ali

Chrystabel · Joined: 13 Jan 2008 Posts: 4

Thank you Al and ali! Hey, sounds like the name of a TV show! Laughing

I appreciate the linked threads and I have read all of them now. Its hard not having a smoking gun but I still don't think its worth it to start eating gluten breads. I am pretty sure I have Candidiasis and maybe I had a leaky gut before I got this gluten sensitivity. Wouldn't be surprising considering all of the antibiotics I've ingested from childhood on.

I was curious though-I read in another thread that pneumonia (strep?) is linked to CD. Does anyone have more information on this? I find this fascinating considering my predeliction for pneumonia and my health meltdown a few years ago. Also-any links to Epstein Barr Virus? I have this and so does my oldest daughter.

Well, diagnosis or no, I'm going to continue as a gluten free gal and plan to step up my efforts to avoid unknowingly consuming it. Still, I wonder what I should do about my kids. Do I have to give a doctor a reason for doing a celiac panel on one of my kids? There are reasons I feel they should be tested. Especially ma one year old son-he has a constant distended stomach and some pretty fierce digestion issues.

Thanks again.

Chrys