Dude note: Five emails per day for four days. Here’s part 3.
Soooooooooooooooooooo, I was diagnosed with celiac in late October 2016. I spent the next 6 months receiving treatment from a naturopath. I went and had my colonoscopy/endoscopy and the internist didn’t think I had celiac. But I continued to do as I was instructed and did a complete cleanse then started adding foods to see what was causing the symptoms of a histamine disorder. Doing well. Then I check in with my GP and he tested me again to later tell me that I don’t have celiac and all my labs came back great! Wow, so happy to hear that! I was so exasperated in spending $$$$$ on supplements, spending hours in the grocery store reading every label, the Drs visits buying every book on celiac & autoimmune diseases that when the GP said I didn’t have celiac I went back to my old way of eating. Not as bad, but glutened. Now it’s been 10 months and I’m right back to where I was in October of 2016.
So I guess my question is HOW do I stress to my husband’s family to stop trying to feed us. It’s annoying to me when I repeat myself over & over to them please don’t include us in meals for awhile until we get this figured out. These people are obsessed with food. They have to eat 3 meals a day and snack throughout the day. They’re all over weight but seem to be concerned that because I can’t keep weight on I’m failing my husband because I’m not taking care of myself. Side note, we’re 60, he just had a heart attack. His lifestyle has to change as well. I thought (even though it’s awful to have a heart attack to get your head out of your ass) we could finally do this whole new lifestyle change together. Apparently not.
[Scratching my head trying to figure this one out. Have now drawn blood from my scalp so will stop scratching and start typing.]
If I am reading this correctly, you were diagnosed with celiac disease. And then went to a naturopath for treatment. Then got retested and was told you do not have celiac disease. So you started eating gluten again and now feel like doo doo. Now you’d like your husband’s family to stop feeding you. Did I get that right?
First…sorry about hour hubby. Hope he is on the mend. Second…once a celiac, always a celiac. You cannot get rid of the disease. Three…while I am all for natural treatment over medication when possible, the only treatment for celiac disease is a gluten-free diet, so I’m not sure what the naturopath was trying to offer/sell to you. Fourth…I won’t comment on the issue of your husband’s family feeding you. I will just assume there’s more to the story than I’m getting out of it. Can you not feed yourselves? I just don’t get it.
Have you seen the article on Celiac.com about “hyper vigilant” celiacs having a lower quality of life? Interested on your take on it. I find it rather annoying that they say we have a lower quality of life when being hyper vigilant when they don’t address the fact that without being hyper vigilant we would probably still be suffering symptoms. I would rather be hyper vigilant and symptom free than less vigilant and sick every day!
You mean the same celiac.com that pushes garbage products? The same celiac.com that defends Cheerios? The same celiac.com that says gluten-removed beer is ok? The same celiac.com that dishes on celebrities going gluten-free? That celiac.com? I did read the article (it was in other publications as well.) Here’s a link. It was a horseshit headline that was totally misleading. And the quality of my life is just fine, thank you.
I am a 75 year old M S lady GF 40 years, terrified about going into an institution in a state unable to control what is on my plate or in my food. Please address the need to connect us elderly GF’ers on line and create a protocol to alert nursing homes, hospitals, retirement homes that our lives are in danger from their kitchen practices. (I studied to become a dietitian too) YOU TOO WILL SOMEDAY BE FORCED TO RELY ON OTHERS TO FEED YOU SAFELY. We all need to start working on it now or we all are in mortal danger in our age. Thanks for reading. A loyal follower with MS. Please include us.
This is something that TOTALLY needs attention and I’ll see what I can do. If anybody else out there could take on this cause, it’s desperately needed.
Is it normal to get really sick if I am accidentally glutened even though I never ever used to get sick prior to knowing I had celiac? I had “silent celiac” so it was really hard to go gluten free because eating gluten never bothered me. But I did what I had to do and gave up gluten. Now, even the smallest amount of gluten bothers me. HOW COULD THAT BE? If giving up gluten heals you inside, why would accidental exposure bother me so much? Do doctors really know what they are doing? How can doing the right thing bother me when doing the wrong thing never did?
I’m not doctor (nor have I played one on TV) and I steer clear of medical advice. That being said, I believe what you are experiencing is quite common as I have heard it from many others. My take? Your intestines, though you didn’t have symptoms, were pretty effed up. Once you went gluten-free, they eventually healed. Now when the foreign body enters your system, it’s like “What the heck is this? Uh-uh…ain’t gonna happen.”
I just re-read the above paragraph and it looks like I have no idea what I’m talking about. I know what I want to say, but not quite sure how to verbalize it. I’m using my lifeline. Anybody??
Hey! Read your book first, over all of the others available. I like your cut the shit style by getting straight to the point. Refreshing. Sorry you have this disease, but selfishly glad you are in our corner.
So, my 10 year old daughter was diagnosed with celiac disease a week ago. Yes, I am in the “clear everything out and heal her gut and educate myself, so I can educate her” stage. It’s either controlled chaos or like herding cats, not sure which.
First, a disclaimer. This is not a husband bashing email, more one coming out of frustration. My husband likes scientific data, studies, experts. His last statement to me about celiac is he didn’t believe exposure to gluten was binary. He believes there is a threshold. And there very well may be, I think in Esposito’s book she said an 1/8 tsp could trigger a response. He took issue with the 20 ppm FDA labeling. (It’s not like the man walks around with a damned digital scale or a triple beam balance to check what amount is safe.) And those amounts are minuscule. I keep trying the microbiology cross contamination or the it only takes 3 E. coli of a certain strain to cause illness examples. Nada.
I handed him your book. He said he wanted to read scientific studies. Insert your expletive of choice. I did. Several.
What I need advice on or direction to, is data. He just needs to read and read what will educate him in a way he feels confident in. Are you aware of any studies or med professionals you trust that you can recommend for him? Things like how are these thresholds calculated? What is optimal functioning capacity for the small intestine? Like I said, data.
You know, at the heart of it, I think he is scared for his little girl. Scared for what this diagnosis means for her. I mentioned cancer and infertility and I could tell he wasn’t ready for that. So, arming himself with data and studies is what he needs.
Ok…let me get the niceties out of the way. So glad the book helped and happy to be in your corner.
Now…for some tough love. Sorry, but I call BS on your husband. Celiac is not some new disease that needs to be scientifically validated still. All of the data is out there. He’s just gotta look for it (if he wants to…perhaps he’s in denial a bit.) If he takes issue with the data that is out there, that’s on him to find data that disputes it. I wish you luck.
(Phew…one more day!)