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Irish I wasn't taking aim at you in that post or this. You will have to tell me why you feel personally chastised. I clearly said then and now that I did not include everyone.
In fact, due to my eyesight my screen has to be enlarged to a point where I don't see the names of who says what unless I scroll left to find out. In some cases I do scroll left and have found you be a voice of calm.
In this case I didn't look to see where all the negativity was coming from because there were four pages of it. I will say that there were not many ways for Opa to respond in the midst of all that.
Thanks Irish, I am not obsessed about anyone's health. I like to be diplomatic. But when I see this and know that six hundred something people have read the thread at this point I think about more than one person and offer caution where it is needed. If someone can show my comments to be incorrect I would carefully read any information they have.
I just re-read my post and it seems I did write protein where I meant to say fats. I apologize for the confusion. Please read the article I linked though, I took the time to type all that out because I was concerned. I have had friends who ended up in kidney failure because of the Adkins diet. I don't want that to happen to you.
I read the initial post as a quote for discussion. I am not sure why Opa has been bashed en mass. Not that everyone is bashing but many of you are, for what reason? What if it wasn't meant the way you decided to take it? What if Opa only wanted to know what someone else thought? We want others to be generous with their responses to us, can't we clarify before jumping on top of someone with both feet?
I just looked this thing up, it's called Nexvax2 developed in New Zealand. I don't know what the rules are there but in the US the word "vaccine" would be a misnomer. This is basically the same as old fashioned allergy de-sensitization. My first thought is, that would mean it could worsen or even cause DH but I don't know that, it's only a guess.
In the US drug trials aren't done like this so I'm not sure how advertising online for research subjects will affect the research outcomes either. The FDA in the US has nothing even resembling de-sensitization of celiacs mentioned.
Could this medication turn out to be useful? It might if it works, is properly used, and marketed. If someone who is super sensitive or has a traveling lifestyle that leads to being accidentally glutened and the medication works as intended, it might improve the health of those people. In that way it could be used and marketed but not as a cure for something that can't be cured or as an excuse to abuse the body.
It does sound like a kidney pain. Smaller stones can block a ureter and then move depending on your position, relieving the pain. I had one big kidney stone that started with a severe, sharp stomach pain that quickly moved to my flank. When it did, I couldn't move, couldn't be still, couldn't talk, couldn't quit throwing up, I was all over the place.
You may be able to flush it out with lots of water and cranberry juice if you can drink that. AZO over the counter will numb the ureters BUT is no substitute for medical treatment if you have an infection or a stone. AZO won't treat an infection, only some of the pain. A kidney infection that has gone that far needs treatment fast. If it is an infection you are one step from it being in your blood. Did that sound serious? Good, it was supposed to.
Call your doctor and it will be okay, your not that sick yet. Good luck, hugs!
I thought I was having a bad time with seasonal allergies but then decided I needed to look more closely after reading several threads. I had been patting myself on the back for how easily I removed the gluten from my cabinets. I'm familiar with severe sensitivities to things like peanuts where parts per million can cause anaphylaxis but had not heard this in regard to celiac before. Even if I had, I'm not sure I would of connected woods that had gone through the dishwasher as retaining traces large enough to cause a problem.
I understand physiology, research, treatment and the big words doctors throw around like weapons, but you all have the practical daily living experience in this disease I don't.
Time is another thing I didn't understand. I improved so quickly at first by not adding extreme daily injury, I thought that would continue. It's probably part of why I thought I wasn't super-sensitive. I'm realizing now there hasn't been enough time to make those judgments yet.
I didn't realize some of you were talking about this. I can hear, feel and smell things others can't but it is more like outside the range of what most people can detect. When thunderstorms are fading there is a high-pitched, static sort of sound in the clouds no one else seems to be able to hear. I am more bothered by loud noises and bright lights than anyone else I know and those can set off a migraine if I'm not careful.
As a nurse I could find pulses most people could only find with the Doppler after I had marked them. It caused lots of confusion with documentation because pulses are recorded as either felt, heard, or absent. What I could feel the previous nurse had recorded as absent and the next nurse recorded as heard only because I marked on the skin where to listen. The reason for documentation is to record changes with the patient, not the nurse, but each nurse has to document what they actually observed....
When someone has more sensory input than other people the world can be overwhelming. They are bombarded with things most people don't have to deal with. When this develops in children and they withdraw to protect themselves, we call it autism. Autism isn't always a disease in itself but many times a symptom.
There isn't much research to connect hyper-acuity with celiac except the connection to autism but autism is a spectrum from non-communicative to high-functioning and it seems those of us lucky enough to be able to deal with the world. Keep this in mind and cut yourself some slack. It's not your imagination and your not being cranky. Loud noise and bright light is painful. I know.
This goes both ways. There are people who can't see what most people in the world can. I've run across a few people who don't realize the light changes color with the seasons. Painters use stark whites and blues for winter light and orange for fall light. Mention that to some people and they look at you like you have grown an extra eye in your forehead. Changes in light with the tilt of the sun is measurable and obvious to most of the world, but still some people just can't tell the difference.
Philosophy says that perception is reality, meaning we can change our reality, but I believe the opposite is also true. Our reality includes perception most people don't have and don't understand, but is still quite real.
Wooden spoons and cutting boards. I use a lot of wood because wood has natural antibacterial properties plastics don't. Wow, you all are bringing up such great issues I hadn't thought of. When I decided to remove the glutens, I didn't know if that was the problem so I gathered them all into a cabinet above the refrigerator to keep from reaching for them without thinking. I haven't thrown them out yet because I'm not sure if I will be asked to challenge (or whether I will agree to that). I am thinking I should gather these other things into that same cabinet and clean as best as possible for now. If I have a deep cleaning done only to go back to gluten for a challenge, I will have to have it done again.
I can get a few cheap plastics that can go in the dishwasher to use in the meantime.
I call myself someone who is serious about nutrition but honestly I have to be careful not to let that actually mean "kitchen snob" I have mostly avoided plastics, preferring wood, glass and metals. Oh darn it, I just realized how many great wood handled knives I have
I don't know if any of you have done your own skin patch test for allergy? I am thinking of doing that with some of the spices I use often.
Thanks all, so it's more complicated then. I assumed by the fact that it took this long in my life to find the gluten problem that was only found accidentally, that I wasn't super sensitive or it would of been more obvious. But I am super sensitive. At least I am to many other things, like household chemicals, fragrances, cosmetics, lotions and other toiletries.
I have other food sensitivities, scallops in particular is a damned shame. Beef causes lots of problems, as does pork and in the last couple of years chicken too. I have been able to eat homemade yogurt, fresh or white cheeses and eggs without noticing any problems so far. I can get away with beans as long as it's not very often.
Years ago someone got the bright idea to allergy test me. They got half way through an unpleasant process and realized I showed positive in a big way to every single site. That is when they realized I must be allergic to either the skin cleansers, the solutions used for the allergy preparations or the syringes. It was decided to stop and retest me using different processes. I declined to go through that over and over and then to take allergy shots that would never completely rid me of allergies. Maybe it was a mistake. Maybe I would of shown a pattern of allergy to gluten grains then, I don't know.
I bookmarked the links, thank you. I have new glasses today and my fingers still type okay but my eyes are wishing they were closed. I will read those tomorrow.
A few weeks ago I replied to someone in stage two kidney failure. In her case it was because of protein in her urine from lymphedema she was born with. I hope she is doing well. Starvation to the point that the body begins to consume itself for the energy to live can also result in ketosis, and then kidney failure.
The Adkins diet and severe restriction of carbohydrates which are the body's main source of energy, forces the body into ketosis which means burning protein for energy. This is always a problem because Ketones (acetone) are difficult for the body to dispose of. It spills over into other body systems like the respiratory system and is blown off, so there is a fruity smell like diabetes or alcohol. It is the same molecule as the acetone in nail polish and paint remover. A small amount can be tolerated but the more there is the more toxic it gets.
I know of several people who have put themselves into kidney failure this way. It is not harmless and the fact that so much protein (a large particle that blocks renal tubules), and resulting by-products of metabolism, Ketone, needing to be excreted by the lungs proves dangerous levels are present proves that.
I know there are many websites saying otherwise but those are written by people without credentials, with no education to back up their claims or without morals. It isn't your fault people are trying to make money at the expense of your life and health. Especially with Sjogren's Syndrome which can cause so much damage of it's own. Find someone reliable and credible to listen to. You may not want to hear this from me, but whether it makes me popular or not, I am going to say what I know. I am not going to tell you something that can damage your health or worse.
I'm sorry, I over-reacted. I was thinking about being in the third grade with anxiety issues. It is so hard to be in the third grade but this has to be intolerable for your poor baby. I'm sure you are suffering as much as she is having to watch her struggle.
In one way you are lucky, many doctors don't recognize anxiety in children and don't treat it thinking they will grow out of it. I know you don't feel lucky with treatment not going well yet.
I have a sister with major anxiety problems. She went undiagnosed most her life and paralyzed in fear. I'm sure I projected my anger from that with my response. I guess my feeling helpless to do anything for her just came out.
It's no fault of yours though. Again, I'm sorry for reacting that way.
Rather than ask related question in several other threads and hijacking everyone else I decided I should ask this:
I have had a really bad couple of weeks. I thought it was allergy and weather extremes. I've always had this sort of thing, migraines, various autoimmune problems and that could of course be exactly why the last couple of weeks have been bad but how do I know the difference?
Years ago I began having migraines, problems with my pituitary that went undiagnosed then underdiagnosed and then other autoimmune problems began. I was born with pretty bad allergies.
In general I have to say there is improvement because I'm not eating obvious gluten. Before now I ate whole foods, fresh or frozen veggies and fruit, eggs, milk, cheese, homemade yogurt, brown rice, single spices (not blends) and healthy fats. I haven't had much trouble figuring out what was safe to eat and gluten free because eating the way I do is straightforward. I know what is in my food because it's recognizable and I put it there.
What is the best approach to getting gluten out of my life?
I'm single so I don't share dishes, pot, pans and utensils. Will I need to buy some things new because they have been contaminated beyond what the dishwasher can clean?
Living in an apartment means having your stuff at the mercy of your neighbor's bugs (something I learned the hard way years ago) so I always keep things sealed in airtight containers or bags. Most people who cook and don't do this have all sorts of stuff in their cabinets, refrigerator and freezer that I don't, but every-time something is opened, I know there are unintentional traces left behind.
Do I need to hire cleaning of the areas that could be contaminated like kitchen cabinets, drawers, pantry and surrounding surfaces and carpeting? How far can the contamination travel?
How do the rest of you know the difference between migraine, brain fog and feeling sick because of mold in the spring or from accidental glutening? I don't doubt anymore that I have a problem with gluten. I just don't know how to tell it apart from whatever else is going on.
Anxiety..... of course she has anxiety. Wouldn't you be anxious if your life caused you pain? If no one seemed to notice how hard you tried or listened to you?
However treating a symptom (alone) isn't going to help and neither is the doctor's condescension. As a parent, straighten you back, raise you chin look straight in that doctor's eye.
Tell him/her to either pay attention or you will be finding someone with the compassion due your daughter.
Say it in an even tone without raising your voice.
Don't let your gaze waver.
Do let your daughter see you stand up for her in a positive way.
Then be prepared to either discuss the situation or find another doctor but either way your daughter will know someone has her back. Keep letting her know that and the anxiety should start getting better.
It might help to talk to a grief councilor too. It's not going to be easy to learn how to be different from the other kids since she has already been traumatized but you are on the right track now.
Good luck, tell her we are all cheering for her
Hmm, I thought of a few issues that could account for your different smells:
All of us smell things a bit differently so I wonder if those smelling "gas" can tell the difference between a gas stove and a bottle of ammonia cleaner?
Celiac is a disease of malabsorption, you all know that the food eaten isn't absorbed. When we lack nutrition our bodies burn whatever is available, fats then proteins in muscles. Protein metabolism in large amounts can't be excreted by the kidneys so alternative methods are needed. It is possible ammonia is being blown off by your own respiratory system. However, I say possible because my experience is with ICU patients. I would expect anyone with ammonia levels this high to be profoundly ill, and may be confused.
I only say this because anyone smelling ammonia where there seems to be none, I think, should notify their doctor.
People with migraines know an aura means a migraine soon. Auras can include many symptoms. I sometimes get a tightness in my face or my digestion simply stops like someone flipped the power button off. Then, I will have a migraine between four and twenty-four hours later and when I do, my stomach can be upside down for days. This has been so bad that I became dehydrated and had to be hospitalized.
For some people, symptoms like that are the migraine and they don't get typical pounding one-sided headaches but they do get very sick. Many of these people don't realize they are having migraines and many never get treated because they don't say anything about it.
There also are types of seizure where a person does not lose consciousness but either doesn't remember or remembers like a dream. This type of seizure can be preceded by an aura, and again, is often overlooked. Other people will describe it in different ways but what is common, is the person doesn't understand or can't remember the behavior being referred to. These seizures, depending on the type, can be rare, but I have seen even the rare type several times over the years.
Basically, new or unexplained phantom smells are valid symptoms that can mean something, and worth reporting to the doctor.