18 replies to this topic

[GFreeMO]

Yesterday I went to see my new gastro. He actually diagnosed me as a super sensitive celiac. He told me to eat nothing from a box. (no prepared foods) He said that gluten free labeled foods are becoming a fad and that he even suggests to his IBS patients to eat gluten free and that not all of those packaged foods out there are actually safe for celiacs.

So I am officially joining the super sensitives club.

[GottaSki]

Wow...I am impressed - great suggestion - yet not common among medical profs. Consider yourself fortunate.

Processed gluten-free products are not good for any newly diagnosed - IMO - they should be used as occasional treats rather than staples.

[dilettantesteph]

Congratulations to your GI for being so well informed. It was a GI in my group who told me too, back more than 5 years ago. Back then there didn't seem to be hardly any awareness of this condition. I'm really glad to see it becoming more well known. Congratulations to those on this forum for helping with that. Still, I read all the time about people following the gluten free diet who still have symptoms or even positive endoscopies who are told either they are non compliant or that they have refractory celiac disease. I find that sad when I know from personal experience that good health can be achieved even when you are sensitive to very low levels by eating mainly non processed foods and following challenge/elimination diet practices.

I hope that you are one of the less sensitive super sensitives. I also hope that you don't find your apparent sensitivity level going down even further as you get your diet cleaner. Best wishes.

[GFreeMO]

Thanks. It is nice to know why I have kept reacting to packaged gluten free foods. One thing that is bothering me is that I run a low grade fever while glutened and he really didn't know anything about that which concerns me. Do you know anything about that? He wanted to send me to an internal med. doctor which I have already seen and she sent me to him.

[GFreeMO]

Ate something out of a box for dinner and blew up like I ate a basketball. I guess I really do need to listen to the gastro - nothing from a box. - This is going to be hard but I can do it.

[GottaSki]

Ate something out of a box for dinner and blew up like I ate a basketball. I guess I really do need to listen to the gastro - nothing from a box. - This is going to be hard but I can do it.

You can do it...it does get easier. I've been box and bagless for over a year and can't imagine going back -- although I will add some convenient items back in once my stubborn gut heals.

[GFreeMO]

Lisa, every time I see your profile picture it makes me want to get out there any try skiing! We moved to ski country recently and it looks like a lot of fun!
Thanks for the encouragement, I am going to start no boxed or bagged tomorrow.

[dilettantesteph]

I eat mainly from the garden. Real food starts to taste a lot better after awhile. You learn to cook better too. You can do it. It helps to make extra so that you can reheat, though at this point I mainly cook fresh because it tastes so much better. You can grow herbs in pots in a sunny window and they add a lot of flavor. My teenage son eats this way too. If a teenager can do it, you can. You know how much junk most of them eat LOL. You definitely need some sort of treat. I have a honey brand I can tolerate. They just sold the business and I sure hope that they don't change anything. I also grow sugar beets. They make a nice treat too.

I love skiing too, but it's been a long time. We don't have good skiing where I live now.

I don't have personal experience with fever as a symptom of glutening, but I have heard of others, especially children, who have.

[Opa3]

He actually diagnosed me as a super sensitive celiac.

How did he Dx'ed that for you? Some test method, blood test result or by symptoms alone, etc?
I might join the club myself soon.

[GFreeMO]

Steph, I read in another post that you make your own juice. How would I go about doing that. I do have a little electric juicer. I do have a small herb garden growing in a basket in my living room window. I have been using McCormick spices but I don't think that they are agreeing with me. I do need a treat! Honey would be wonderful. How do you go about finding a safe brand? I saw some local clover honey. Hopefully that would work.

Opa, he said that most of the packaged foods are for people on gluten free diets for other reasons or for weight loss. He said that these companies are cashing in on our disease and it's about money and not helping people with the disease. He said that celiacs should not be eating most of them and that we need REAL food in order to heal.

[dilettantesteph]

I make apple juice. I need a better juicer. I use a centrifuge kind and it leaves behind a lot of pulp which I put in my apple sauce. I have also made grape and pink currant juice which I did by squishing and then straining through a sieve.

I had problems with McCormick spices too. I know some super sensitives who use Litehouse brand freeze dried herbs, but I haven't tried them myself.

With honey, I tried a lot of brands before I found one that I could tolerate. I learned a lot about making honey in the process. I thought they just put the bees in a hive and let them do their thing, but no. There are things they can feed them in the off season, things they give them to treat disease, things they give them to calm them down when they handle things etc. I found a company in Hawaii which doesn't do all that, but their honey is very expensive which is why it is a treat. They just changed ownership of the company so I don't know if they will continue to do things the same way or not. They are called Volcano Island Honey. I hope you can find a less expensive honey which you can tolerate. I wish that I had been able to find a local honey.

I think your doctor is right.

[teruff]

I am also a super sensitive celiac. I personally hate how 99% of all the gluten free food I still cannot eat because it makes me sick. My sisters and I were struggling for a few years testing out different foods and figuring out what makes us sick and what doesn't. Well we finally figured it out but still test new foods every now and then. I'm glad your doctor told you to stay away from packaged foods, most of them will definitely make you sick! I dont know how long you've been dealing with this but I have quite a few food suggestions if you would like to know some new foods that you can have. With making your own juice, I highly recommend investing in a juicer and getting the "Juicing bible", it has helped my sisters and I SO much. With the lack of nutrients and vitamins you're not getting from the gluten free food juicing is the best way to go about that, it may not taste good but you will definitely feel 100% better!

[IrishHeart]

I find this discussion very interesting. And no, Opa, there is no special diagnosis for super sensitive.

My GI doctor (very celiac-savvy and knowledgeable) deemed me "sensitive" (as I react rather strongly with many symptoms--and for weeks-- to a trace CC glutening) yet I am able to use McCormick spices when I cannot use my own fresh herbs and have absolutely no trouble at all with them.
Also, juicing has caused me mega trouble in the past (high fructose and histamine issues) even though fruits and veggies are incredibly healthy foods.

I get honey from a local beekeeper and I'm fine with it. and I've used other "shelf brands"

I do not eat very many things from "boxes" (but in a pinch, I use Pacific stocks and canned tomatoes )and I almost always cook and bake from scratch, but honestly, I do fine with certified gluten-free companies (for flours, nuts, etc.)

So why the differences with the same "designation"?
I guess this is the problem with varying symptoms and rates of gut healing, the onset of symptoms and most importantly, the delay in diagnosis.

No "one size fits all", I'm afraid.

[mushroom]

No "one size fits all", I'm afraid.

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.

[IrishHeart]

EXACTLY!

I've never been able to wear "one size fits all" either, Shroom. Ample hips and boobs (I prefer the term Rubenesque) and unfortunately, not long enough legs to be a Rockette.


Mo,

At DX, I could not eat much of anything (citrus, corn, acidic foods, GFoats, legumes, dairy, soy etc--all killers for my gut)
In time, I've been able to add most foods back in.(I have a high histamine problem at the moment, so that takes out a lot of foods, but hey, my life of various illnesses and complications, delay in diagnosis and the road to recovery has not been a straight line, so, I just roll with it.)

Your doc may be right about "nothing from a box"-there are many preservatives, additives, fillers, etc.
that none of us humans should be eating. Some of those things put in foods scare the beejeepers out of me.
I totally agree with his suggestion to eat real food.