Right after I had my foot infection, I started having some stomach pain, gas and a strange itchy spot on the back of my leg. I did look up what side your appendix was on and my pain was on the opposite side. At the time, I had just come thru a two-year ordeal with my foot and unless something was gushing blood, it was getting put off. I had more than my fill with doctors.
I know that I should not have put things off, but after 20 months of seeing doctors at most 2 weeks apart and the norm was more like every week, I was trying to avoid doctors as much as possible. I also had a PCP that told me when I was having shortness of breath and chest discomfort that I couldn’t possibly have heart problems because I was able to use my treadmill. I kept the problems that I was having to myself.
In the spring of 2008, I developed an ulcer on the bottom of my foot. When I went thru the original foot wound, I gained about 65 pounds because of not being able to move around. When I had to quit using my treadmill again that spring, I was determined that I was not going to gain that weight back. My normal calorie allotment has always been 1200 calories and I gained the 65 pounds eating 1200 calories a day. I decided in order to not gain the weight back, I cut back even further.
That particular ulcer took about two months to heal. As soon as I had the go ahead to get back on my treadmill, I went back to eating normally. When I went back to eating normally, the pain in my stomach, gas and itchy spot all came back. That is when I finally made the connection to food. The one thing that I had cut out during that two months was bread. Gluten is in a lot more things than bread, but at the time, that was the only item that I was consuming that contained gluten.
At the time, I knew nothing about Celiacs other than my nephew had been tested for it. He is at high risk for Celiacs because of having Down’s. I started my search by looking for “wheat allergy” because I had seen people talking about wheat allergy. As I started looking, I started reading about Celiacs and everything seemed to fit.
Prior to my stopping gluten, I was always nauseous. I have gastroparesis so I always “assumed” that the nausea was because of the gastroparesis. After I removed gluten from my diet, the nausea went away.
I made the decision not to talk to my doctor about it because I did not believe that I would get any help from him. I decided that because the only treatment for Celiacs was avoiding gluten, that is something I could do on my own and not have to kiss a doctor’s butt to get help with.
Although it is true that you can make the decision on your own and know that you feel better not eating gluten, I would recommend getting the testing done. One reason that I say that is because some drugs have gluten in. Most insurance companies prefer you take generics and if the generic has gluten in and the brand name drug does not, you will have an easier battle with your insurance company if you have proof that you have Celiacs.
I take Furosemide, which is the generic for Lasix. I started having the stomach issues and itching again after my pharmacy changed to a different brand Furosemide. Fortunately, my pharmacy was willing to work with me that I can have a different generic brand and that is a drug that there are plenty to choose from. If it is a drug that doesn’t have another generic available, you might not be as lucky. Also, just because you don’t take things today doesn’t mean that you won’t need something 40 years from now.
Last summer I went to a rheumatologist to be tested for Sjogren’s. I have “gluten intolerant” on my medical history. I did have an ER doctor write that on my chart after he talked to me – the nurse who had a friend with Celiacs pointed it out to me and told me that I now have it on my records. The rheumatologist wanted to do the blood work for Celiacs but at that point, I had been gluten free for about 3 years, minus holidays. I pay the price when I do have gluten. He did the gene testing for me because the test for Celiacs will come back negative if you are really gluten free.
Approximately 95% of people with Celiacs carry either the HLA-DQ2 or the HLA-DQ8 genes. When they tested, mine came back negative for those two genes. That surprised me because I know that I have a problem with gluten. I am also of Irish descent and Irish people have the highest rate of Celiacs. Celiacs is growing very fast in Africa and they may have taken over the lead for the highest rate.
I started looking to see what the other genes meant that I did have and when I Googled HLA-DQB1*0202, I hit the jackpot. A very small portion of people with Celiacs have that gene but not the two predominant ones. I have read some articles that say as low as 1% of Celiacs have that haplotype and others put the percentage as high as 6%.
DQ2.2 is shorthand for the DQ α2β2 heterodimeric isoform. The isoform is encoded almost exclusively by the DQA1*0201:DQB1*0202 haplotype. The haplotype is linked to DR7. A small percentage of coeliac disease are associated with this haplotype, and some disease causing gliadins are presented by DQ2.2.
I had my testing done thru Quest, so I thought I would copy what they had on their site.
Susceptibility to CD is linked to certain human leukocyte antigen (HLA) class II alleles, especially in the HLA-DQ region. HLA molecules are postulated to present gluten antigens to T-cells which in turn induce tissue damage.2 Approximately 95% of patients with CD have the HLA-DQ2 heterodimer encoded by the DQA1*05 and DQB1*02 alleles, while close to 5% have the HLA-DQ8 heterodimer encoded by the DQA1*03 and DQB1*0302 alleles.1 Rarely, patients will carry only one of the DQ2 alleles; ie, either DQA1*05 or DQB1*02.
Fortunately I had access to the test results and looked stuff up before my appointment because the doctor was ready to dismiss any possibility of a gluten problem because I did not have the major genes associated with it.
Associations of HLA-DQB1 with chemical compounds
CONCLUSIONS: Latex-fruit allergy is associated with HLA-DQB1 *0201, DRB1 *0301, and *0901, as well as with HLA-DR functional group E, whereas latex-not-fruit allergy is associated with DQB1 *0202, and with both DRB1 *0701 and *1101 alleles.
Just because someone has a gene that is associated with some disease that does not mean that they will actually develop that disease. Something like only 30%-35% of the people that carry the main genes for Celiacs actually end up developing it. But I do think being tested for the genes can help people.