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I'm going to post this here instead of starting a new posting because I have a spice issue that I didn't expect. I had been doing the Live Below the Line challenge, so everything I've been eating (what little there was), was homemade of ingredients I felt sure of. Then on Thursday I woke up just feeling sick. I thought it was that I wasn't eating enough and maybe was dehydrated (it's been hot), but today, I had what I think of as a definitive glutening symptom for me of tingling neuropathy in my wrists. The only thing that was different from the other food that I'd been eating the previous days was that I had opened a new container of Target's Market Pantry garlic powder to use on my potatoes.
Has anyone else gotten glutened from these spices or seasonings? I'm guessing that there was factory contamination since there was no additional nutrition info on the jar.
It continually makes me sad that I am so damn sensitive.
Sadly, once you've gone off gluten, it is not a good idea to go back on even for a test. But there are benefits and drawbacks to the diagnosis. The drawback: a diagnosis, any diagnosis, is considered a pre-existing condition by insurance companies, and if the health care bill is ever repealed or gutted, that's the first protection that will fly out the window.
Benefits: With a celiac diagnosis, you will likely find it easier to get the kinds of medical screenings an adult with celiac disease should have (regular blood tests to monitor for vitamin deficiencies and anemia, especially, and bone density testing). Also, there is the possibility down the road that there will be a treatment for celiac disease that may then allow people to eat glutened foods. It's likely if you don't have a diagnosis, then the treatment would not be available to you.
But I am in the same boat you are. I went off gluten and any testing that was done before I did was not showing any damage. I get sick really quickly from gluten and I think that some of the ways it affects me is neurological. I'm not willing to sacrifice the health of my gut and my brain to get "the diagnosis."
I'm also a bit on the side of the person who said they thought that gluten intolerance really is celiac disease.
Since I've figured out I'm gluten intolerant, I've also been able to track my hypoglycemia to times when I get glutened. When I am not having symptoms of being glutened, then I don't seem to have the problems with low blood sugar so much (unless, of course, I don't eat for a really long time). Maybe you do need to pay attention to the complete, highly packed protein more. There are protein powders that can help supplement if you are wanting to eat less meat, but may just focusing on high protein snacks throughout the day would help too...if you aren't allergic to nuts try a peanut sauce on gluten-free noodles or over rice.
Hypoglycemia absolutely sucks, and I'm sorry you are struggling with this.
P.S. Always plan for longer in grocery shopping and bring a small magnifying glass (I have one I got for free that's actually plastic). Manufacturers are required to list wheat, but you are right that they don't list the other things and it is always good to read the label.
I'm so glad you stopped in for the support. I don't post or read very often, but my co-workers were toasting bread and I needed some moral support, even though my brain knows that eating regular bread will make me nauseous within a very short time and uncomfortable in the longer term. I am really sensitive and react very quickly to gluten...that has been a huge help for me.
But despite that I resonated with your post. Changing eating habits is really hard, especially when the effects of the way you eat are not immediately evident. And even for those of us that do have the immediate effects, there is a mourning period. The best piece I read about mourning and celiac was in the Gluten Free Bible. Awesome chapter on paying attention to those feelings.
But, as everyone says, the long term consequences are frightening if you keep eating gluten. I was diagnosed rather quickly (within 2 years of onset of symptoms), and I saw the effects of eliminating gluten within a month. But I now can remember one of my great-aunts who sort of withered away. The tale was that she just laid down and waited to die. But my family now tells me she wasn't supposed to eat wheat, and I think she'd had a lifetime of asymptomatic celiac disease. That is not the future I want to see myself in.
Keep coming back and looking for cooking resources. Modifying recipes in cookbooks can be really fun, and I'm learning how to be really positively assertive when I plan to eat out. As for snacks...when I get glutened, I get bouts of hypoglycemia. I'm not diabetic, though. Having roasted peanuts (if you can eat them), or trailmix (making it yourself is fun), is always helpful during those times.
Having some of my symptoms come back recently (and not knowing the cause) reminds me of all the things that I appreciate when I'm not glutened
- I didn't lose weight, but I did lose size
- no more burps, farts, & heartburn
- my libido returned (I hadn't realized how much it had cranked down)
- ability to concentrate and care about responsibilities (depression lifting?)
- decrease in nasal allergy reactions
- complete elimination of tingling hands
- decrease in PMS and menstrual symptoms
- blessedly regular BM
Going to have to figure out where I'm getting the gluten right now, as I want all that to come back again.
I forgot to add that I had a wonderful time in New Orleans. I was sad at the dietary restrictions, but by asking the right questions and not being shy about sending things back when I needed to, I did pretty well there. I've really only noticed feeling sick since returning from the trip.
Update: I contacted my mail order folks and was shocked to find out that they could not tell me if there was gluten in any of the drugs (nor did they say that they had made an attempt to find out). I was given a list of phone numbers for the different pharmiceutical companies to check out and sent on my way. This was particularly scary to me because another allergy I listed (which is also often an inactive ingredient) has in the past caused anaphylaxis and hives. I've sent them an e-mail questioning how safe I should consider medications that they are sending me.
The Pfizer rep I spoke to, after telling me that the med was gluten free, read a disclaimer that they cannot guarantee that minute amounts of contaminant are not present, as they do not have complete control over their suppliers.
The good (?) news is that all the drugs I was switched to are gluten free. The bad news, I don't know what's getting to me now. I guess I'll start on the rice, boiled chicken and steamed veggie regimen again and start adding things in slowly. *Sigh*
It is always a challenge, but here's a response I've come up with to help my "internal doubting Thomas" remember why I'm doing this.
Do you remember the novel "Flowers in the Attic?" In it the evil grandmother brought the children being held prisoner a wonderful "treat" : powdered sugar donuts. This "treat" became a regular and all the children started getting slowly sicker and sicker. (Now that I think of it, many of the symptoms were similar to Celiac/gluten-intolerance.) When one of their siblings died, they discovered that grandma was lacing the donuts with small amounts of arsenic. Eating gluten for me is like eating small amounts of arsenic. It's going to make me sick, and if I do it regularly it will kill me.
The question you have to ask yourself is, if you were offered arsenic laced donuts would you eat them? If not, why are you essentially doing the same thing to your body by continuing to eat gluten?
I have serious moments of grieving and craving gluten foods. I never thought it would be that bad when I started cutting it out...then one day reading a description in a novel about fresh baked bread, I almost started crying. I fantasize about having Bakesale Betty's Cinnamon Rolls (I'd affectionately nicknamed them Crack) most of the time. But I am supremely blessed to live only 7 blocks from Mariposa Bakery where I can get all sorts of good gluten-free baked goods.
Your going to have to weigh the benefits against the consequences. One thing you might try is seeing if you can wear a mask at work. This might not be possible if you are in a customer service position, but if you are in the bakery they would probably be open to it.
I cannot imagine how triggering having to be on a gluten free diet is for people dealing with anorexia. My hope is that those of you who are dealing with this are working with mental health professionals. The only way to have a healthy body is to be able to work on loving your body (which means working on loving it even when its bloated). Peace!
I was doing really well...even got through a trip to New Orleans (had to send food back a couple of times when my being allergic to wheat and flour got interpreted only as I couldn't eat wheat bread!) without too much hassle.
But since the trip, I've noticed a recurrance of symptoms. I'm wondering if I was starting to have symptoms on the trip as well although it was generally just minor stuff. Last week, I'd convinced myself it was PMS, but the symptoms are continuing well past that point.
The one thing new in my routine is that I had to switch to a mail-order pharmacy, and I know that at least one of the medications I'm taking is completely different (different manufacturer, different look to the pill) from what I had been getting before. What's especially troubling is that I wrote under "allergies" that I was allergic to gluten. If it is the new med, then they didn't even try.
Unfortunately, I'm feeling like crap today and can't even get in touch with my pharmacy or the drug company that made the drug.
This is more of a vent than anything else, but I'd love to have suggestions or hear other people's similar experiences.
What you are experiencing is peripheral neuropathy. It is common in Celiac (or coeliac) Disease. In fact, when I get gluten it recurs and I know that the gluten has worked its way out of my system when it goes away.
Mine showed up at night when I was sleeping...in both arms and would sometimes linger for hours after I woke. I didn't even realize it was a symptom until I stopped eating gluten and it went away.
You really need to get gluten out of your diet. Once you have and you notice a dissipation of other symptoms, but that symptom persists, you may want to go see your doctor as they may want to look at other neurological issues.