Bedbugs!!! Hahahaha That was my introduction by fire to the United States (or one of them) on the cross-country journey from New Joisey to California. Salt Lake City, 1:00 a.m., looking for a motel. Somehow missed motel row. Ended up at a fleabag (or so we thought). Ended up being chewed out of bed by 3:00 a.m by bedbugs. And those bedbugs hadn't had fresh blood in a while!!! Hit the road again.....
That is very scary and frightening for you. I am so sorry he is going through this. I will certainly keep my fingers crossed for gluten ataxia, that's for sure. I think if I were he I would quit the gluten right now, to heck with any testing. It will be or it won't be when it comes to testing, but his health is what is important right now. I agree with you, immediately. If it is gluten he is extremely sensitive. Are they planning on doing an MRI? Normally if it is gluten it will show UBO's (Unidentified Bright Objects) on an MRI. ravenwoodglass is the one who has had this the worst, I believe. Maybe you could pm her - she hasn't been on much lately with her new job. ravenwood's genes were neither DQ2 nor DQ8.
Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA
It is hard to know what is meant by CELIAC Ab panel. If it is only the tests with "antibody" in its name, it may not include the DGP (a newer test), or the total serum IgA which is an important control for all IgA testing. Can you call the lab and ask them what they consider to be a CELIAC Ab panel? And if it does not include the last two I would ask my doctor to include them if I were you, if it is not too late.
The other tests are a complete blood count and metabolic panel as it says, thyroid function, iron and vitamin D.
I think that you need to be assertive and insist that they do the testing. Just tell them you will go gluten free anyway and then no one will ever know, because you can't stand being so sick. Too many of us let the "thems" of this world make the decision for us, and look where it got us - years of illness because we didn't know any better. I am glad your generation is growing up aware of celiac disease and can avoid having the doctors hold the knowledge (but not enough of it) and not sharing it with us. This is all due to Mr. Internet and Dr. Google, I believe, the latter much despised by the medical profession in general (at least those who are intimidated by an informed patient who doesn't just say, Yes, Doctor )
The post-gluten course is often a little unpredictable, since we are all so different. You may experience miraculous improvement right away. Certainly, if you are allergic to dairy and eliminate it you should notice a pretty immediate improvement. With celiac, it is less predictable. It depends on the amount of GI damage, it depends on your level of addiction to gluten and whether or not you go through a withdrawal period of two or three weeks. Certainly, you have a lot of healing to do, and it is not like turning off the faucet and everything is all better. Have you had testing done for nutrient deficiencies (vitamins, minerals, iron?) If you are low in things like Vit.D, B12, iron, you will need to rebuild your stores before you start feeling significantly better. Nevertheless, within the first couple of weeks you should notice that you are feeling a bit better but do not be upset if you are not because of the other factors.
You may find that your food is still not digesting properly because your pancreas needs to heal from the gluten too, and is not putting out enough enzymes, which you will then need to supplement. It also helps to restore the good flora in your gut by taking probiotics. In your case if you are allergic to dairy you will not be able to do yogurt so you will have to get dairy-free probiotics.
If you are lucky, your allergy testing will have picked up on just lactose intolerance (although I do think it is the protein casein they test for, come to think of it), but if you are only lactose intolerant you may be able to regain dairy at a later stage.
No need to go looking for problems that might or might not happen. If you find you are not improving, talk to us about them and we can give further advice.
Repeat after me: I WILL NOT ACCEPT AND EAT FOOD JUST TO BE POLITE!!!! If someone had made you a cyanide sandwich would you have eaten it?? Of course not. And that cheese sandwich is the equivalent for your body. Do not keep doing this to yourself. It is not impolite to refuse to eat something that will make you sick. Tlhere are polite ways of refusing food. You can go from "No thank you" to No thank you, I can't eat that" to "I'm sorry that you made that just for me, but I really can't eat it or I shall be very sick." and anyway in between or in some other way, I don't care how you do it, but you DO refuse the food.
How much gluten was your daughter eating, and for how long? It sounds like she may not have been exposed to a lot of gluten in her life for such extreme reactions, even if her tests were negative. Did they run a total serum IgA on her? And if so, what were the results? The low D and iron, and the elevated inflammation (ESR) are telling.
I am assuming you are diagnosed celiac since you are eating gluten free. Unexplained anxiety is one of the big symptoms of celiac that not too many doctors know about. Does your doctor know about it? Oftentimes they can give you something for it to get you over the hump, but you don't want to get reliant on those things either if you think you can manage without. Just know that it is a symptom and that it will get better Of course the coffee / caffeine was a pretty dumb way to try to lose weight because it messes up your whole metabolism, not just the weight part But then you know that now Drink plenty of pure clean water to flush your body and eat a really clean diet. Is your diet so restricted because you cannot handle other foods, or just what you have started out with? Can you try some meat or fish protein and some green vegetables, some rice, mashed potatoes? I think you need a little more bulk passing through your digestive tract and even though you may not be absorbing them well, a greater variety of nutrients. Speaking of which, did your doctor test you for vitamin and mineral deficiencies, because some of these deficiencies if you have them could really be affecting your mood also. However, if you have been eating a lot of gluten, you may be going through gluten withdrawal and your body may be craving it. This is not at all unusual - it can be almost as bad as nicotine (and coffee!! - you might be withdrawing from that too, if you haven't already.
Good luck with the gluten free way of life and ask for anything you need help with. That's what we are here for.
I don't know about you all....but mine is about 60% AT and 40% inflammation -- or perhaps 40% AT and 60% inflammation -- just know I look 30-40 pounds lighter but have only lost 10 -- riddle me that.....
What looks like fat and makes you fat, but isn't fatty fat?
It is probably easier in life for those of us who have grown up knowing that one size does not fit all, than realizing it later in life. For those people who can wear the average hat, the average gloves, the average shoes, to whom the catalogues proclaim "one size fits all", and it fits them, they really may not know that this is not the case -- for anything! I don't even bother trying on anything that says "one size fits all" from my too-big feets, my too-big hands, my too-big head (no, not swollen, just big enough to cram all my brains into ) and, alas and alack!! my too-small boobs (or is that two small boobs? ) So it goes with my life. I have diseases and medical conditions that no one else has (well, extremely rare , rare enough they dunno what to do with them at least, if they can even identify them), if a side effect is rare I will have it, and I always have contrarian reactions to things such that I sometimes wonder why I read the warning labels on medications, because if I react it will either be the opposite of what they say or something totally different so that they say "that is not a reaction to that drug".
So does the range of sensitivity to gluten surprise me? (you didn't think I was going to get back ON topic, did you?) No, it does not, Does my reaction surprise me? Yes, it does, because I am not a super sensitive at all, which is why I was able to tolerate my symptoms so long undiagnosed. But I do have sensitivity for those who are, who must be so careful to avoid even the smell of cross-contamination, a danger that for myself I would just kind of laugh at. And fortunately my husband is not a super sensitive either, although I scared him straight _________________showing him some of the DH pictures on the forum after he had his little DH episode from cheating
I hope I am able to look down on the year 2050 when they are sitting around talking about all the stuff we were totally unaware of in 2013, and saying, "How could they not know that??"
So all we can really do is tell people what works for us. We cannot tell people what will work for them or how they will react. I see many people come on the forum, knowing all the answers, and saying "this is what will happen to you". Well, guess what?? It probably isn't. It could be, but you are an n of 1, and unless you have an identical twin nobody has your genes, and even if you do have an identical twin you may develop celiac disease and your twin may not.
So there ya go!!
Happy sleuthing and quick healing, every one of you n's of 1.