Posted by gary'sgirl
on 07 October 2012 - 12:42 PM
Shauna, Thank you for making this post.
I stopped making posts on this board for the most part, because in my very fragile state of health, it was hard for me to mentally deal with people not believing me or making it seem like concerns of mine where "all in my head", when I was already dealing with this in my life with the people that I know personally.
I know that when things were suggested as being mental, rather than actual real reactions to a physical thing, that people were not trying to be mean. I recognized at the time that they were simply saying what they believed to be true and didn't want people to suffer because of something that was imagined, or continue to suffer because they were thinking something was gluten related that was maybe something else all together. It's really hard, though, to come to a place where you think that you might actually be heard and find people who understand and sympathized, only to be made to feel like someone thinks you're a wacko - because that is what happens a lot, even if it is not intended.
Often the way that this psychosomatic stuff is presented is very absolute. As though the person suggesting it is an expert and is the authority on the matter. I think that's where a lot of the misunderstanding comes in. Sometimes things are stated as absolute fact when really most of Celiac Disease is still a mistery. Some evidence we have about the disease might at some point be proven to be incorrect. I think we have to allow for this when people express their concerns with something. Some thing that we think are true might not be - only time will tell.
I, for one, have been completely shocked by some of the things that my kids and I react to, and we do not all have the same degree of reaction. One of my daughters will get DH from things that some people on this board claim that you can't react to. She reacts within 10 minutes, therefore I can tell you without a shadow of a doubt that it is a real reaction - she is only 7 and doesn't even really understand what gluten can be in and is not scared of it, so I know that her reaction is not mental.
That's not to say that the mind doesn't play a role in physical reactions at times, because it does. But we do need to be careful to not judge someone about that, who knows, we might be right or wrong about thinking things about others, but what we should really be doing is encouraging our fellow gluten intolerant friends.
And I think that encouragement is what most offten takes place here. That's a really good thing. We should just keep in mind that we have the ability to also deeply discourage people too, and should be careful with how we choose to address topics with that in mind.
I think everyone on this board really wants to help other fellow Celiacs/gluten intolerants, and that is so awesome! It's a true blessing to people looking for help.
I don't know whether or not there could be gluten in nail polish remover. I only recently found out that there could be trace amounts of gluten in some nail polishes, so I decided to just stop using any for now.
I just wanted to encourage you that even though some people may not think that you have to be careful of topical gluten, I and my kids definitely do. I don't often post about it, because people who don't have to deal with it don't tend to understand and can make you feel like you are crazy - even on this board. But that is okay because they just haven't been there and can't relate on the same level at the time.
In my experience if something topical has gluten in it, it may not matter how careful you are about washing your hands. It only takes one moment of being distracted and touching say, your cup of water before you wash your hand and then after washing going back and touching the cup and then putting a bite of food in your mouth. Most Celiacs may not react to this very small trace amount of gluten, but I do, and every time I have second guessed myself and thought that I couldn't possibly react to that little then I inevitably get sick.
I say do what you feel you should do even if most celiacs don't think there is a need to. And if you find out any other info about the polish remover please let us all know!
Posted by gary'sgirl
on 04 November 2011 - 02:45 PM
Look up Fructose Malabsorption (different from fructose intolerance). Two of my children with Celiac had a similar experience as your six year old and we finally found out about FM and it took care of the lingering symptoms like throwing up.
Some people have to go on the FODMAP diet, but some just have to limit the amount of fructose at a time and the overall amount in a day.
We ended up only having to take fructose out of the kids diet, but I have to be on the FODMAP diet.
Fructose is high in thing like apples and apple juice, other fruits and veggies and in prepared foods when you see honey or high fructose corn syrup in the ingredients list. There is some info about it on this web site in the forums.
My mom and sister were both able to go off their thyroid meds after the doctor told them they would have to be on them for life.
They think it was largely due to changing their eating habits - taking out refined sugars and grains for the most part.
So, i think there is a possibility of the body being able to heal it's self if given the right circumstances.
My daughter get's DH from the smallest trace amounts of gluten. Until just recently (she has been gluten free for a little over a year), whenever she would have a breakout from CC, it would continue to get worse for 1-2 weeks and would not start to clear up for at least six weeks. I think it would stick around for up to three months at first.
We started the Specific Carbohydrate Diet in Sept. and it seems that since that time when she does have a reaction it has been lasting less and less time. I just realized that over that last couple of weeks she has broken out twice, but it has been much less severe and started to get better after just a few days and one time was completely cleared up within a week.
I don't know if that helps any, but it might take more time for your body to heal and it might not hurt to look into the SCD diet or Gaps diet if you don't see better recovery after a while. - I know that we didn't start to recover very well until doing the SCD.
I'm so sorry Rachel, I really hope you aren't having a miscarriage, but i will be praying for you either way.
I had a miscarriage last year and it was really hard. Let me know how you are doing. ~Sometimes life is really hard to understand - it's hard to see what God has planned in it all. I still have a hard time with it at times.
I'm sure it must be hard for you tonight... having to wait for the test results. I'll definitely be praying for you tonight.
Posted by gary'sgirl
on 23 January 2011 - 08:58 AM
hi, thanks very much for the reply!
i will definitely be taking the endo at some point, i have to get an accurate reading if its celiac or not. given that - do you think i should re-introduce gluten to my diet? (gradually maybe, or in any way). im still not gluten free by any real standard, but im maybe 85% there.
If I were in your shoes, and wanted the endo to be as accurate as possible, then I would schedule the appointment for 3 months away and start eating - at the very least - the equivalent to 4 slices of bread a day, probably more. I think that would be your best bet for getting the most accurate results as possible.
If you think that it will take you more like six months to get the test done, you could try taking gluten completely out of your diet and be really careful about CC. If your symptoms improve and you start feeling better you might have a worse reaction when you reintroduce the gluten again, but you also may feel that you are so much better that you won't even want to do the test and feel confident in the dietary results.
Posted by gary'sgirl
on 04 September 2010 - 09:43 AM
Yes and there is also a difference I think when folks have more autoimmune impact in organs other than just the gut. It takes much more gluten to damage the villi than to start the antibody autoimmune response, IMHO. I do not for a minute doubt those who react to very small amounts of gluten from any source whether breathed in or injested or absorbed into mucous membranes from rubbing your eyes or nose etc.
I agree too. I know that I have reacted through these types of exposures and I think that my children have too.
Posted by gary'sgirl
on 02 September 2010 - 06:53 PM
I have gotten sick from a small amount of crumbs that made it into my mouth, obviously, because it's the only way that a Celiac reaction can occur. It happened almost exactly the way you described your experience. No matter what way you are exposed, you would have to get enough into your GI tract to cause a reaction. That's why washing your hands is so important and not just for avoiding gluten.
Yes. Exactly! This is where I think some people are more, and some people are less sensitive - some will react to such small amounts of CC that you can't see it, while others seem to not react until they ingest a little more.
Posted by gary'sgirl
on 01 September 2010 - 10:10 PM
I just wanted to say that I agree with Dilettantesteph. Some people really are more sensitive to gluten than others. When I was very new to this - only a couple of months into the diet, I didn't yet know how sensitive people could be. One night my daughter (who also has Celiac) was playing with a neighbor friend and I looked over to see what she was doing and saw her take a bite of a cookie that the little girl she was playing with had given her. I went over to her and told her that this cookie was the kind that would make her sick. I made her put it down and when I brushed off her hands some crumbs flew up in my face. I didn't think anything of it at the time, but within a half hour I started getting the dreaded stomach cramps etc... Since then I have found I and one of my daughters with Celiac react to much less gluten than most do - even just touching a counter that someone else touched that had gluten on their hands and then putting something in our mouth with that hand, has caused a reaction.
Not to say that what Lisa said about it being a psychological thing could never happen, because I'm sure that it does sometimes, but some people really are a lot more sensitive than others. I think you just have to be discerning and look a the individuals personality and whether or not the person tends to have physical reactions to emotional things. I just say that, because even before I found that I was "ultra" sensitive people would act like I was being crazy about how careful I needed to be and it made me feel even more alone with this health issue and anyone dealing with their health really just needs to feel supported. - Which I think you are doing, because you obviously care enough about your husband by trying and understand this better and help him. You're a good wife!
This same thing happened with my daughter and my son. I noticed blood in my daughters diapers at about 5 months and I think around 6 weeks for my son.
We had the same problems with the doctors - exactly the same. My ped. thought it was a dairy and/or soy problem, but I went off of those for 8 months with no improvement (I was nursing her at the time).
It's a long story, but after researching their symptoms my self for a long time I came across the symptoms for Celiac and both of my children had almost all of the symptoms and I had at least 20 myself.
We finally saw the Gi for my daughter and I told him every thing and my thoughts about them (and myself) having Celiac. He disregarded the celiac thing and thought that my daughter was just constipated and gave us a prescription laxative. My daughter and son, would have D, but only a couple of times a week some times only once in a six day period. My natural doctor said she thought that it was constipation that caused the bleeding, but that after not being able to "go" for too long the body would cause her to have D. Once I talked with the natural doc. about my concerns of Celiac (I was just getting diagnosed with it at this time), she thought that the celiac was the cause of the constipation.
Shure enough after taking them off of gluten the blood went away and they started sleeping better and eating better (my daughter had been eating less and less as time went on until she was only eating a couple of spoonfuls of apple sauce a day).
I don't know if any of this was too confusing, but if you think it might be gluten you could just take him off of it - I know that he wouldn't get officially diagnosed, but it might not be worth the worry while you wait for those stinky doctors to see him.
If you have any questions, I am happy to answer them the best that I can.
I hope things work out and that you get to feel less stressed soon. It's the worst to be going through this with a child.
Actually, my doctor talked to me about taking something stronger for a sleep aid...I told him to get out of his office. I am terrified to take something as it did not work for me and drove me almost straight into madness. My mom sides with Doc and also thinks I should let him prescribe me something. Doc said that I wouldn't have to take it every night just when it got past 4 days or like every Friday or something. My mom is willing to come stay with me on the weekends in case anything goes wrong and I still won't do it! Mom and I are going on a cruise at the end of September so I am going to keep on keeping on for the next two months. When we get back, I will reassess and consider the drugs.
I just wanted to add that there are a lot of natural things you can do if you don't want to try meds. I think that in general medication should be used as a last resort - there is a place for it, but it is much better to try natural things first if you are not in a crisis situation (usually going the natural route take more time).
Anyway, you can do a search for natural sleep remedies and bring what you find to your doctor or of course you can look into going to a natural doctor who would already know many different things you can do. There's also things like lifestyle changes such as doing relaxing things a couple of hours before bed, taking an epsom salt bath with lavender essential oil and drinking a cup of calming tea (there are several that help with relaxing) going for a jog at a strategic time of day to help your body to relax at bed time etc...
Well, I just thought that I would throw some suggestions that didn't involve needles and meds out there. I hope one way or another you figure out something to help soon.
EDIT: I was referring to the sleeping problem, but I don't think I made it clear at the beginning of my post. I don't really know enough to give advice about bipolar or mania at this point. -Sorry if I left anyone confused about what I was referring to.