I tested positive for the HLA-DQ8 gene. There were other multiple clinical signs I got diagnosed based on. I wish I found out earlier.
The connection between Celiac and Obesity
I haven't eaten gluten except three times by accident in 18 months.
What do I miss most?
Fried Chicken, Chinese food, Sour Dough Bread, Pizza and real spaghetti. I kept fried chicken rare for health reasons and knew I had to curb the carbs, but those are the foods I miss the most. Some of the Chinese food I can replicate by myself, using tamari, even the chicken I can put it in rice flour and have. Pizza, well I found some gluten free pizza dough once at Aldis but it seems to come around only once a year like Santa Claus. Some brands are better when it comes to gluten free pasta, but it's hard to find in my town or runs out. There seems to be legions of hungry celiacs around here because many products go poof!
Food also costs a lot more, all gluten free products are far higher in price. I get frustrated a lot trying to afford food or figuring out decent food to eat. America stinks when it comes to food. I am not sure if I just live in an town that is horrible when it comes to groceries and supply chains or if everywhere is like this now and I just don't realize it.
Keep in mind as you read this, I cannot eat potatoes, fish, wine, sulfites, shellfish, and a multitude of other foods due to medical conditions. All dairy must have Lactose Milk accompany it. I haven't eaten a hamburger [I've had a few bites of hamburger meat] or a pork chop in 12 years. My diet is very restricted. Yes it is at the point what can you eat? Now wipe away all the gluten. They sneak it in everywhere too.
I'm no longer a "silent" celiac. I used to think well some poor celiac people are more sensitive, I felt for them when they talked about barfing their guts out or getting scared some underpaid sandwich makers at a sub shop rubbed their gluten free bun by accident on the cutting board used for regular buns.
That's me now! I puke and get bad runs, if I accidentally eat wheat now. How do I know? I ate some ranch dip with veggies at an art club meeting and was puking with extreme bowel pain that very afternoon. My husband even asked me if I needed to go to the hospital. I may have mentioned this event in another blog post. Three bites of cream of broccoli soup, also made me puke. "Maybe they thickened it with corn starch", think again! My blood sugar was low and that was the only food available. Three bites couldn't hurt could it? I was throwing up within the hour.
The results are so painful I am too petrified to cheat. If you ever wonder if celiacs have an off day and say "Screw this, I'm eating pizza today", they don't. You get too sick and suffer very badly. The suffering can be the kind where one's spouse wants to drag you to the hospital instead of watching you cry in the bathroom. At this point I have tightened down the hatches, and have gone weeks without an accidental ingestion but that's a cook from scratch diet, no risk taking like with ranch dressing on veggies at an art club meeting. Yesterday, I bought a bunch of Indian food, paneer, spices, split-peas, and rice flour.
I went on black seed oil some time ago and started another new supplement-full of various herbs. My eyebrows always thicken up when I get more B-vitamins, I ran out of methylated B vitamins, and my eyebrows thinned out almost immediately. My hair doesn't grow at all unless I'm on these vitamins.
Sometimes I wonder what Celiac did to me all these years. It is kind of scary to have been in a body everyone blamed you for and abused you over for years and years and been this sick and then diagnosed with at least five conditions that directly impact weight.
my other supplement. I'm on multiple ones.
I thought "Man nothing was ever enough". There are times I wonder how my life would have turned out if I had been a normal weight. There's a lot of things I missed out on. That's physical stuff. Yeah I know the diet queens will say "you failed, you didn't starve yourself enough", but sometimes I get pissed thinking I probably had celiac back to my teenage years when the IBS then was off the charts. My teenager years were spent being late to school from being in the bathroom and constantly getting in trouble for being late from my "IBS". I do worry about the state of my intestines, and how bad off they are from all the years of damage from that misdiagnosis. My doctor did an advanced intestinal test for cancer, it came out negative, thank goodness. One odd thing, from some of the malabsorption problems probably healing, my hunger levels dropped. Don't get me wrong, I still get hungry, I am still insulin resistant, but an edge seems to have come off it. My malabsorption problems were SEVERE to even need so many outside vitamins, it's why I got diagnosed with malnutrition multiple times.
I don't know what my weight is right now, it was going down some, 460 was the last weight, but I fear some mobility problems could have affected it. I don't think I've gained, I still have rubber bands on my too loose underwear to hold them up but guess I will find out in a couple weeks.
My joints are in really bad shape. I had difficulty walking today and had to tell some friends I didn't want to go upstairs, because walking just one floor of the 5,000-10,000 square foot art center had worn me out. They have elevators there, but my leg was hurting. I move, I bloat. It seems counter-productive, doesn't it?
My mobility is kind of in danger, my knee hurts a lot getting up at night and that has to do with continence issues. Walking hurts. They say do more walking and I'll probably walk some at this zine fest soon, so some stuff motivates me to walk around but it's hard. Life would be easier with a scooter or power wheelchair, but then I can't afford one or a lift and then part of me is afraid of gaining weight. It's really affecting me. I want to do stuff, but it hurts so much to move around. Some joints go out, even my wrists.
Supposedly Celiac Disease is supposed to impact a lot. I also found out a lot of women with Lipedema had it. There is a connection there. Remember scary autoimmune diseases go with severe stage Lipedema. I know a woman a woman with both Bullous pemphigoid and Lipedema. That's a really bad one that causes a lot of pain and suffering. I've met other stage 4 Lipedema women with a vast array of bad autoimmune diseases like me.
My hearing has dropped gotten worse, it's ebbing away, why don't they have support for people like me. It's made communication with others very hard, I am completely transcribe phone dependent to understand or communicate with people. [unless they write me] This body hasn't been too nice to me. It's good I survived this long but it took a lot of work to stay alive too. I'm tired. Age is starting to weaken me now.
Thank God, I got away from jerks though who treated me like crap for being fat. No one has mocked me or abused me for obesity except online in years. Maybe people can tell I would knock them flat or maybe the deafness and other extremes of my body make it plain to others, there's far more problems than obesity. I'm old now too, no beauty queen contests left and I don't care. Few knew I was 240 plus under my peak weight from years ago. Friends around me, saw how rigid the eating habits were even before I had to be gluten free.
I hope I will lose more weight but the problems with chronic fatigue and other bodily systems putting me in bed too much, are a problem. Doctors are more forgiving I've noticed. There were physical changes after I switched to gluten free so they know, I had other complex problems. Labs changed, kidney stones dropped in number by A LOT.
No one talks about being old, and super-fat, maybe because it rarely happens though I knew a lady with my stage of Lipedema who made it to her lower 80s who weighed in the mid- 400s. Lately I'm afraid of my bladder taking me out, but that could be an autoimmune thing as discussed with my urologist. I'm hoping I make it, I have to dedicate some time to studying how to solve some problems the naturopath way and a good friend send me some AZO supplements. Some migraines have been a problem too, and they've been the visual ones. Maybe it's stress. Maybe I need to rest more. Maybe I'm getting old, and well pushing yourself with chronic fatigue brings problems. The walking thing concerns me a lot. I'm still on a walker, but the joints hurt. This week, my forehead broke out in red sores, the hearing is bad, and joints acting funny. I'm probably in a flare. I worry a new statin is giving me brain fogs and muscle problems but then MCTD/UCTD can cause those too.
I'm supposed to see some physical therapists soon, Ive been having problems sitting, my falling stomach I think is putting pressure on other places. Physically I am a mess. I know some wonder how is she still even alive? I did put some effort into it all. The worse thing is the fatigue, I could go to sleep now, but after I get out of my leg machine, I have to empty the dishwasher, and do a few things like that. I have to take my supplements too and if hungry enough make some lunch. I always think I should skip more meals but I still do best eating on a regular schedule.
I'm going to write an article soon about the financial life of the disabled, focusing on realities from that end. Getting the celiac diagnosis probably saved my life from the kidney stones alone. I'm still anemic though I guess they see that one as having multiple causes. They are learning more about Lipedema which is a positive development and it is very interesting to me, they are finding out the ties to Celiac/gluten now.
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