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Posted 9/2/2009 3:13 AM (GMT 0)
Hey all - had my follow up appt. with the Doc at Ohio State.  It appears I have Celiac Disease as I carry two genes and a positive antibody test for gluten.  Will see what happens in the next 6-8 weeks, when we redo some of the lab work and continue on the gluten free diet in the meantime.    He believes my osteoporosis and Vit D deficiency is a result of the Celiac, among other vitamin deficiencies, as celiac keeps you from absorbing nutrients.   His vitamin and supplement protocol, along with the gluten free diet,  should, over time,  make me feel better and improve my health.  I am curious to see what it does for my fatigue and pain, which have been pretty bad lately.  Feel like I'm in a perrenniel flare.

He felt my trouble with taking the megadoses of Vit D had to do with my body's inability to absorb it properly.  He has me on 1,000 twice a day, along with the other things.  I've been eating gluten free for 2 wks since getting the lab work done.  Lost 4 lbs.  Dh is doing it with me for now.  Sometimes it seems really hard, and other times not so bad.  I will miss the joy of baking - especially bread.  But I would do (or not do) just about anything to start feeling better or at the very least, keep my health from continuing to worsen.  

I know some of you have Celiac along with Lupus/UCTD - did you find some relief or improvement after becoming gluten free?   Thanks in advance -

Lucy 

Posted 9/2/2009 1:53 PM (GMT 0)
YES! As difficult as the diet is, the benefits are worth it. I have been totally gluten free for almost two years, now. My overall symptoms improved somewhat, I can tell the difference between the onset of a lupus flare and when I have accidentally been "glutened". The symptoms are similar. Good Luck! Make sure you get enough carbs - something not easy to do when you are first adjusting to the diet.
Posted 9/2/2009 9:27 PM (GMT 0)
Hi Lucy, I guess I am one of those lucky people that could not tell a difference in my lupus symptoms since being on a gluten free diet. I was dx with celiac and started the GF diet in Sept 03 and was later dx with Lupus in May 2005, but started showing significant symptoms in 2004. So I have no idea how I would feel on a regular diet and I'm not willing to stop to see nono tongue ! I still have a lot of lupus symptoms as my lupus is not quiet and it also attacks my GI tract, so I get a double whammy!

I hope the gluten free diet helps you, please feel free to ask more questions.
Posted 9/3/2009 11:58 PM (GMT 0)

Thanks Fran and Stacie - always nice to know you have company.  I'm sure I'll have some questions down the road, but strangely, the only one I can think of right now is what kind of mustard is gluten free? tongue    I just got back from a 3 hr "road trip" and my brain is fried......and I'm hungry - no more quick stops for take-out.  Better go figure something out.....thanks for your responses.

Lucy  

Posted 9/4/2009 12:46 AM (GMT 0)
I am pretty sure French's mustard is, that's what I eat.

I'm sorry I didn't include this before, here are some links on safe and forbidden ingredients for the gluten free diet:

www.celiac.com/articles/181/1/Safe-Gluten-Free-Food-List-Safe-Ingredients/Page1.html SAFE list

www.celiac.com/articles/182/1/Unsafe-Gluten-Free-Food-List-Unsafe-Ingredients/Page1.html UNSAFE list

www.celiac.com/categories/Safe-Gluten%252dFree-Food-List-%7B47%7D-Unsafe-Foods-%26amp%3B-Ingredients/ other great info

Hang in there!
Posted 9/4/2009 3:54 PM (GMT 0)

Thanks for the links, Stacie - the "safe" and "unsafe" lists are really helpful.  I'm trying to eat things with few ingredients so I can better decipher.  Mustard seems to be one of those that seems to have pretty much the same ingredients from yellow to Dijon, but it still shows up on the "avoid" lists.

The doctor has me on quite a few vitamin supplements to counteract the malabsorption - I think you're a lot younger than I am, but did you have to do that as well when you were first diagnosed?  

And I'm almost afraid to ask - but chocolate doesn't seem to be taboo - although it often doesn't say "gluten free"  the ingredients don't indicate a problem for many kinds, especially the organic and trade free.   Advice? 

Thanks for the help -

Lucy

Posted 9/4/2009 10:37 PM (GMT 0)
Lucy.

May I also suggest Namaste? They have a waffle/pancake mix that is really good. I make a couple of batches and freeze them individually and just pop them into the toaster or microwave. They work as hamburger buns, too! If you can tolerate potato starch, then there are lots of products that are gluten free. I think Betty Crocker just came out with a line of baked goods. I am soy and potato intolerant (as well as many other things) so I am limited as to what I can eat. I THINK chocolate is ok (has soy, so I can't eat it).
A hint: use a separate toaster that is entirely gluten free - the longer you are off gluten, the more sensitive you will probably become. Even crumbs from a shared toaster could cause a reaction. And, I have found that if I start a gluten reaction, it often triggers a lupus flare.
Good Luck!
Posted 9/5/2009 3:19 AM (GMT 0)

Hey Fran, thanks for the tips!  I appreciate any and all.  I had read about the toaster thing, but didn't quite know what to think about that.  I'm glad you confirmed the importance of that, and my sense that the sensitivity will only grow with time, which is not a happy thought - but as my mother always said...forewarned is forearmed.  No potato or soy?  Wow, you really are limited!  Can you tolerate dairy?  How did you figure out you were allergic to all that?  Did it come together all at once or did you gradually become sensitive to each in turn?  You must be down to rice and corn.  I think I would have a meltdown if chocolate was on the avoid list.  yeah We have gotten chocolate bars from Equal Exchange that have no soy in them.  There would be some contamination from tree nuts during processing - but if you can have nuts..............then again, why wake that monster, right?  tongue

I'm really hoping this diet will improve my fatigue - which is way more troublesome than stomach problems.  Maybe when I catch up a bit on the Vit B and D.....

Have a great weekend

Lucy 

 

Posted 9/8/2009 8:55 PM (GMT 0)
Lucy, I too would go nuts if I couldn't eat chocolate! THe only chocolate we can't have are things like KitKats, Twix, anything with cookie or waffer, etc. Good ole Hershey's bar, snickers, etc are all ok.

I did have malabsorption but didn't have to take any supplements. I really hope you see an improvement in your fatigue, please feel free to ask more questions!
Posted 9/9/2009 3:11 AM (GMT 0)

Stacie, you made my day!  I didn't realize Hershey's would be okay - that will help just knowing it's still there for me (Hershey nuggets w/ almonds my current fave).  I then went looking and found that even M&M's are okay!  Have generally banned those from the house, though, because when they're around I can't find my self-restraint button. nono

I did have a stomach upset over the weekend.  Couldn't eat anything for awhile.  By Monday I could handle food, but not the vitamins.  Am waiting a week and then will start back on them slowly.  I don't think it was a gluten reaction - as I have been very careful - not sure what one would feel like, though.  Did you feel better right away, or did it take some time when you went gluten free?  I've always had trouble taking medicines - do you think there is a connection? 

Thanks for the help!

Lucy

Posted 9/9/2009 3:02 PM (GMT 0)
Hi Lucy,
Sounds like you have the program started and it will work.

I have found that almost all chocolate has soy in it, so I avoid it. That includes Hershey's and m&m's (two of my faves).

Another hint: Some of my meds were tried at generic and they caused a reaction - the problem was wheat fillers! Had to switch back to the name brand. Same thing with daily supplements. I now purchase all my supplements at a health food store so as to avoid the possibility of any fillers.
And on a personal note, I found out the hard way that some feminine products contain wheat fillers, so if you start any problems "there", you might want to consider that! Wish someone had told me!

To answer your earlier questions: I was diagnosed as allergic to peanuts, tree nuts, strawberries, all melons and bananas as a child. As a young adult I saw a new allergist and he ran the RAST bloodwork and it found many more allergies. But then (after almost dying) I was found to be highly allergic to aspirin products. This actually explained so much. The acid in aspirin occurs naturally in almost everything that grows.
So, yes, my diet is rice, corn and meat. Sometimes applesauce, if it is cooked a long time (destroys the acid). And iceberg lettuce. That is pretty much it. And yes, it took years before I was aware of all the allergies. Celiac really wasn't that big a surprise. And I just don't eat a lot anymore.

But, before this post ruins your day -I am an extreme case. Somehow docs believe that the SLE is actually the one responsible for most of my allergies/intolerances. Celiac, alone, while not fun, is quite managable once you get the hang of reading labels. And there many things that you can still eat - btw, corn spaghetti is really good!

HTH Good Luck!
Posted 9/9/2009 6:40 PM (GMT 0)

Hi Fran, I guess we do what we gotta do....but gosh, those are a lot of restrictions!!!   I agree that it seems that celiac, while restrictive, still leaves open many options.   I do think some of the medication troubles I have had, including vitamins, may have been from the wheat fillers.  (I never would have thought about other products either!)   I guess if my tolerance improves, I'll have my answer.  I did call the manufacturer of my generic plaquenil (after being directed there by the pharmacist who couldn't answer my question about a possible gluten source) and was told that "starch" generally indicated corn starch.  When pressed, he admitted that they don't "test" for it, but stated that wheat products are "not intentionally used".  But basically,  he would not call it gluten free.    Were you able to tolerate a generic plaquenil or are you taking brand name?  I'm sorry, just ignore me if that's getting too personally specific.   I did find an index online for gluten free medicines and Plaquenil was listed as brand name - the generic was not.

I haven't seen corn spaghetti - but I'll look for it and the Namaste pancake mix.  It's helpful to have these suggestions....we have to travel nearly an hour to the grocery that has a wide variety of gluten free products, and having a brand name to look for makes it much easier - so thanks again!

Lucy

Posted 9/9/2009 9:17 PM (GMT 0)
Hi Lucy,

Fran is right, corn spaghetti is great! I never thought about the personal products either, thanks for the tip Fran!

You defiantly need to look at the vitamins you are taking, is it a multi-vitamin? I know there is one brand that says gluten free on the bottle, but can't remember the name, I know it's sold at places like wal-mart, etc. I take the generic brand of Plaq with no problems and I am a very sensitive one!!!! I am one of those that would get sick from the crumb in the toaster oven! Oh, also be careful if you have any iron skillets where you made cornbread etc, I got sick from that too.

For me I noticed a difference after a couple of days being gluten free, mainly the abdominal pain was gone but unfortunately I didn't go back to 100% (I have heard it can take up to 6 months). I continued to have diarrhea every single day until 1 1/2 years later when I was dx with lupus and my rheumy put it all together and figured out that lupus attacks my GI tract. I still have GI problems usually when I flare or when I eat too much fruit or veggies but for the most part celiac doesn't cause me any problems. My most recent celiac incident was when I had a milkshake from Chick fil a and ended up sick as a dog! I later found out they only have one mixer and they use it for the cookies and cream as well as all others, so it makes sense why I got so sick. For me when something like this happens I have the cramps and other stuff and the next day I am very weak, but by the third day I am ok. Oh and sometimes if you have a lot of GI symptoms, it's a good idea to slowly add dairy back to your diet or limit your daily intake.

Here are some brands and things that me and my daughter eat:

corn spaghetti (I like Mrs. Leapers) that Fran mentioned with Prego traditional spag sauce
tri-color rice pasta (also Mrs. Leapers) with tuna
Mi-Del has chocolate chip cookies, double choc cookies, ginger snaps (which make a great pie crust) and pecan sandies
taco mix and sauce (Old el paso, the yellow box but not the "dinner kit")
Amy's organic has some gluten free frozen meals great for work or a quick meal, I like the rice crust pizza, vegetable lasagna.
Van's waffles are great!
Progresso soup - chicken and wild rice and cream of mushroom
Bob's Red Mill makes a great all purpose flour
Kinninnick has great bread products (bagels, donuts, cinnamon buns, bread, hot dog and hamburger buns)
Betty Crocker makes a cake, brownie and cookie mix, in my area they are cheaper than the other GF choices such as Pamela's, gluten free pantry.

I know I have listed a lot of sweets / breads, etc we don't eat them on a regular basis but we do treat ourselves every now and then. We eat a lot of chicken, frozen vegetables, fresh fruit, etc.

I hope some of this helps! Take care
Posted 9/10/2009 2:14 AM (GMT 0)

Hi Staci and Fran - I am learning so much with each of your posts - such great information - thank you both so much!!! yeah   I love having the brand reccomendations.  We had brown rice pasta for dinner tonight with garden vegies and some italian turkey sausage (Jenni-O by Hormel - they have a great website that lists all their gluten free products).

Staci, your description of a reaction kind of matched what I thought might have been either a stomach bug or a rebellion against all the vitamins this past weekend.  As it turns out, it just might have been the toaster after all, (thanks Fran)  though I didn't think it would happen after just 2 weeks.  I'm not willing to experiment on that one, however - will be buying a new toaster.  I am having less pain, it seems, over the last day or two, and slightly more energy....knock wood and here's hoping!

Thanks again for all of your help and support wink

Lucy

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