Food/symptoms

[Darby]

I'm kind of stumped. As I'm reading all the posts, most of you get sick after eating gluten. Like physical symptoms. Me... last night I ate a bowl of oatmeat and 2 pieces of toast. And I felt great! I was hungry again a couple hours later.

If I eat a sandwich (with regular bread) I feel just fine.

I'm still going in for my endoscopy that they have scheduled for me.

Darby

[Emme999]

Darby,

Hello. Don't be too confused. A lot of people with celiac disease are asymptomatic. I am still too new to this to know too much about the whole deal but according to James Braly & Ron Hoggan (authors of Dangerous Grains, a book all about gluten intolerance), " Any search for celiac disease based on the presence of symptoms will miss most cases. This is because nearly half are clinically silent. Over half of all biopsy proven celiacs have no abdominal symptoms at the time of diagnosis, even though intestinal damage has been occurring for years."

I would never have thought that I had celiac disease. But, after I had allergy tests that showed I have severe allergies to milk and eggs (and my doctor told me to avoid beef because my dairy allergies are so strong - off the charts!) - anyway, after I started avoiding these foods I obviously started eating more grains. And *then* I started having symptoms (heartburn in particular). Because of "silent" symptoms that I have (osteoporosis) my doctor was smart enough to test me for damn near everything to figure out what was causing the bone problems. We did about 13 tests until it occurred to her that I could have celiac disease and she ran a few more tests (tTG & IgA) that came back positive.

Now that I am preparing for the biopsy, she told me to eat A LOT of gluten containing foods (gluten challenge) and I am seeing symptoms that I never saw before. Plus - little things that might not seem related to celiac disease are hitting me full force (depression/fatigue/anxiety). So - be aware of those things. When is your biopsy?

Good idea to go ahead with the endoscopy I wish you the best!!

[KaitiUSA]

Alot of people don't experience symptoms. Usually the longer you are gluten free the more sensitive you become to it. I did not have reactions to gluten food in the beginning but now I am extremely sensitive to it

For people that don't get reactions I think it would be easier to find themselves more willing to cheat on the diet because they do not see immediate effects. However, it still does damage whether you feel it or not.

[Darby]

Darby,

Now that I am preparing for the biopsy, she told me to eat A LOT of gluten containing foods (gluten challenge) and I am seeing symptoms that I never saw before. Plus - little things that might not seem related to celiac disease are hitting me full force (depression/fatigue/anxiety). So - be aware of those things. When is your biopsy?

Good idea to go ahead with the endoscopy I wish you the best!!

I'm scheduled for Thurs. YIKES!

When is yours?

[Emme999]

Darby,

Mine is scheduled for May 19th (a week from Thursday). You will have to tell me how yours goes!

Are you eating lots of gluten foods?? You totally should, because your intestinal tract actually renews itself every 3 days - so now is the time to gluten binge like never before! (From the book, "The biopsy is simply a sample of cells in the intestinal wall. These cells are completely replaced every few days. This rapid replacement lends itself to extremely rapid healing of the very region that is being examined for injuries that are signs of celiac disease. In many cases, the intestines will appear perfectly normal after just a week or two of strict compliance with a gluten-free diet.") - But keep in mind that I am in no way suggesting that your body will completely heal from celiac disease after just a week or two of a gluten-free diet. Unfortunately, it's a lot more complicated than that

As far as I'm concerned, this is the *last* time in my life that I will be eating glutenous foods, so I am trying to get in the last of my favorites. From all that I've read, and from the way I feel (emotionally, in particular) when it comes to eating gluten foods - there's just no way I'll continue eating them after the biopsy. Now that I know what they are doing to me, they don't even taste that good anymore.

Anyway, keep me updated!

[Darby]

I will let you know. We are leaving for vacation on the 17th. And I might just go off gluten after the test -- just in case. Maybe I'll feel a bit better during our vacation.

I got to thinking... what would I miss the most? As far as gluten. I LOVE bread but, if I can find a good gluten-free bread then there's no loss there.

Pasta... same, if there's a substitute...

Cereals, I guess there's quite a few gluten-free ones out there.

Salads with dressing - same with that.

What else am I missing??

I'm a little freaked out about restaurants. We will be going to Maui so we won't eat out that much since we will be staying in a condo with a full kitchen.

I don't eat out much anyway. I'm an emet (as you all know by now), and I kind of get freaked out about viruses and strange people making my food. I always stick with simple foods when I eat out. Like salads and baked potatoes etc.

Darby

[Emme999]

How long is your vacation? I would guess that it would be far easier (and a whole lot less stressful) to go gluten-free after you get home.

I don't know, I'm new to this! But probably some other gluten-free-ers will have better advice!

Geez I wish I was going on vacation! I can't think of a time when I've ever needed one more than now!

[Darby]

We will be gone between the 17th and 27th. I don't think it would be too bad to go gluten-free while there.

I'm SO new to it I may miss some ingredients that I wouldn't even think of. But, I can try.

I just did a search for health food stores in Maui and there are three. Maybe I can pick up some gluten-free bread and cereal etc. for staples.

When we go there we mostly eat fruit, salads, fish -- light foods.

[tarnalberry]

If you're cooking on your own, and using whole ingredients, you won't find it too hard to be gluten-free in Hawaii. There's far too much fresh produce to taste, and inexpensive, high-quality ahi to cook. ;-)

[skbird]

Definitely - go for it on your vacation. If you have a condo you are set. My husband is now so worried about our travelling anywhere without a kitchen he thinks we should just go camping from now on!!!

Condo is the way to go, especially with all the great food at your fingertips in Hawaii!

Stephanie

[jenvan]

Darby-

First off, have a blast in Hawaii! I went there a year and a half ago--to Maui. Where are you staying? You will love it. And you will have the option of a lot of fresh fruit, veggies, fish etc. there. Make sure you do the 'road to hanna.' But instead of driving up and back down, I'd recommend driving aroud the other side of the island--so beautiful, and you see several types of climates in a matter of a few hours!

I too don't get a lot of the typical Celiac reactions. In the past some foods I could eat, like a bowl of regular pasta with some garlic bread and not really notice anything. My symptoms have been more chronic fatique, fibromyalgia, dizziness..... Until recently, after going gluten-free... I've now started to get stomaches like many others!

[Darby]

We are staying at the Kamaole Sands.

Why do you think you're having stomach problems now and you didn't before going gluten-free?

Sensitivity?

[jenvan]

I'm not sure. I had my gallbladder/liver checked out and they were okay. So, my best guess at this point is other food intolerances. I'm going to do some testing for them. Maybe casein (dairy), soy ? It's strange b/c before going gluten-free I never really had this type of repetitive stomache. Perhaps eating the gluten masked other reactions I could have been having ?? We'll see

I'll have to ask my husband if he remembers the name of where you are staying. We were at the Embassy Suites on Kaanapali Beach. So beautiful there! My husband keeps telling me we should pick up and move there !

[Darby]

Sure, I know where you stayed. We are staying in Kihei.

Well, today I went into my holistic Dr. and told him what the gastro Dr. said and found. I said that my bloodwork showed up with a sensitivity to wheat. He tested me (holistic dr.) and said, "yup, you're sensitive to wheat all right."

So, he did some stuff and desensitized me. Shouldn't eat or touch wheat for 25 hours.

I'm calling my gastro Dr. tomorrow and asking for the specific blood test for celiac and possibly a gene test as well.

I have ALOT of confidence in my holistic dr. He has helped me over the years with all sorts of things. He had not checked me for wheat allergies tho.

Actually he did about 3 years ago and back then before the densenitizing, you just had to go gluten-free til your body was healed up. Then I went back on wheat full boar!!! And I probably shouldn't have.

Desensitizing should last a lifetime.

Now I know all this sounds quite "weird". And "out there".

I think everyone has to do whatever they feel comfortable with. I'm going to go by symptoms and how I feel.

But I am still going to get those bloodtests taken -- as for the endoscopy -- nope, not right now anyway.

Darby

[jenvan]

Darby-

So what does the doc do to "desensitize" you? My husband's family is very much into herbs/holistic medicine, so I would be interested to hear about the process. My husband hopes to find me a natural cure for Celiac too ! I had been to several natural/holistic doctors until I was finally diagnosed by my hematologist. However, there is a difference between just an allergy and Celiac. I do believe that allergies can come and go and sometimes we can lost our sensitivity to them. But if you have Celiac, how would that work--since it is a different type of immune response? As to this point I have not come across any possible way to stop the damage our body causes because of gluten, aside from not consuming it. I would gently caution you, because if you have Celiac, long term exposure to gluten will only continue to increase your chances of other illnesses, like lymphoma. I do believe that natural medicine has some unique approaches to illness that exceed medicine's. But I also believe there can be false hope in the natural way as well. Any thoughts?

[Darby]

Darby-

So what does the doc do to "desensitize" you? My husband's family is very much into herbs/holistic medicine, so I would be interested to hear about the process. My husband hopes to find me a natural cure for Celiac too ! I had been to several natural/holistic doctors until I was finally diagnosed by my hematologist. However, there is a difference between just an allergy and Celiac. I do believe that allergies can come and go and sometimes we can lost our sensitivity to them. But if you have Celiac, how would that work--since it is a different type of immune response? As to this point I have not come across any possible way to stop the damage our body causes because of gluten, aside from not consuming it. I would gently caution you, because if you have Celiac, long term exposure to gluten will only continue to increase your chances of other illnesses, like lymphoma. I do believe that natural medicine has some unique approaches to illness that exceed medicine's. But I also believe there can be false hope in the natural way as well. Any thoughts?

Sure, I totally understand your concerns. And I know alot of you will think I'm crazy. I was upfront with my holistic dr. and told him that I've gone to a gastro Dr. and what they did. He had suggested to me before to get an ultrasound done on my gall bladder to rule out stones etc. You really need to find one that does believe in western medicine when needed. That's where you can get into a load of trouble.

I can't even begin to write thru mail here to tell you exactly what is done. I couldn't do it justice. But, what he does is treat symptoms or ill working organs in the body. There is always a reason why something is not right. For example: your body is like a computer. 6 months ago I started to have nausea. He found it was my gall bladder (not working properly). I couldn't begin to explain how he cleared it. But he also put me on a supplement called BetaFood -- which I'm still on.

And I wasn't drinking enough water. Nausea went away. It came back a few months later. Why?

He found that T4 was out in my back. T4 correlates directly to the gall bladder. It was blocking normal function. He put that back in place and again, nausea went away.

It came back again a week later. I go back in, T4 was out again. WHY? He tested my through kinesiology and found that I had an over abundance of bad bacteria in my gut causing the "computer" again to get clogged up on down the line.

He put me on a supplement called, multimune along with probiotics. T4 has stayed in place and no issues with gall bladder. I did go for an ultrasound last week and it checked out just fine.

Slight nausea came back with some intestinal gas. Sensitive to wheat. And that's where we are at up to date.

How did he desensitize?? That one, I couldn't even begin to explain. You'd have to either see it done or talk with a Dr. who does it. I couldn't explain by writing it.

I asked him about celiacs and how would HE diagnose it?? He said, "you have to treat each organ, one at a time and get things working properly." Computer is majorly messed up and it just spirals on down the line causing more and more problems. Like my gall bladder - you correct one thing and something else happens, fix that, something else crops up. Til you get everything working together as they should.

I personally believe in finding good Dr.'s who I feel comfortable with and getting as much help and information that I possibly can. And that means, holistic, and western medicine.

I admit, I don't trust western medicine as much as I do eastern. Because every western medicine Dr. I have been to just want to treat with medication. PLEASE TREAT the problem not just the symptoms!! That's not fixing it.

I remember years ago I was SO SICK during the holidays. It got to the point that I couldn't get off the couch. I was so nauseaus and couldn't eat or drink anything.

I went into my holistic dr. (this was in a different state from where I live now). And he knew right where to check. He checked my ilosical (spelling???) valve which is located on the right side between hip bone and belly button. The way this valve should work is open and close properly. Sometimes it can get stuck in the open position or closed. I believe mine was stuck closed. Causing a headache and nausea. He fixed it and within 5 minutes I was feeling like a new person. I went home and I was weak but fine. Magic uh?? LOL.

Darby

[jenvan]

Darby-

Very interesting to hear what you have to say. I'll admit I lean more towards West than East. I think so much of it is how one has been raised. My husband and I have had many discussions about it. He grew up with collidal silver, iridology, enemas and a host of other natural treatments. I guess I am suspicous all the way around because neither the "med" doctors nor the natural docs diagnosed me. About a year ago I was seeing an acupunture type doc who worked on my back, "pumped" my gallbladder, did electrical impulses (can't remember the name now), and myofascial muscle stripping to try and help me. I was so disapointed in the end. I had had high hopes for him, and in the beginning he had some great ideas, and in the end I had to go through some painful treatments and only felt worse. It seemed like one thing always lead to another, and each time we thought we had finally found the answer. I thought "He didn't figure it out either." Prediagnosis I had muscle testing and iridology done too, treated for liver stones, parasites. Sometimes I go "Ah ha!" and other times I go "Are you kidding me?"

I guess my philosophy would be a combination of both. Somtimes only the doctor has the skills to diagnosis because of proper tools etc, and sometimes only the natural doc can figure out what's going on. It's true that regular doctors rarely look to things like intolerances, yeast build-up etc., and that oftentimes they choose meds for symptoms first. In the past two years, for problems related to Celiac, I've been prescribed (and never taken), heart medication, blood thinners, presription muscle relaxers and antispasmotics. ...when I really needed none of them. That is scary...

My husband has one other doc he wants me to try. He wants me to believe in 'natural healing', but unfortunately isn't hasn't worked for me in the past and so I have a hard time putting stock in some of the things he does. I'm sure I will continue to try the natural route in some ways though. I also can't help but believe that when God made the earth, that included natural healing properties and resources. There have been some small successes in the natural route. We shall see. (Can you tell it's an internal debate ?!) I'll be curious to hear how things continue for you.

[Darby]

I've also had acupuncture and it didn't help with anything and I HATED the needles. I've been to different chiropraters who did kinesiology and didn't like them. I've only had two holistic dr.'s that I did like. One in Colorado and the one I have now. He is always going to seminars and clinics to further his knowledge. I don't like the ones who refuse to keep learning.

I will keep the board posted on my symptoms and progress etc.

Dr. Morgan does not like me taking valium and Compazine (when needed of course) so I don't tell him about them.

When you're really freaking out about something -- I'd rather have something that works FAST!!

He had me try a natural remedy called, rescue remedy but it didn't work well for me. My fear over rode it.

Although -- I did use it on my horse and WOW - it worked wonders. She started to tie up (a muscle disorder that can happen) and I gave her a whopping dose of the stuff and within a few minutes she recovered.

I hope you find one that might be able to help you out -- along with the western medicine.

This am I'm feeling real good. Didn't wake up with a huge amount of gas like I usually do.

Darby