Could It Be Something Else?

[gailc]

Hi, I'm new to this site.

I heard about celiac disease on the TV program The Doctors. I thought "hey that sounds like me" I had just made an appt for a colonoscopy snd because they wouldn't let me talk to the doctor before the procedure I finally cancelled the appointment.

I'm not sure if they do the biopsy going thru the mouth or the other end.So how the heck am I supposed to schedule an appointment?

Could this be something else--I am 14 days gluten free and my gut is experiencing a world of differences. The pain is gone and the cramps are gone. I had a headache for about 4 days at the start which I was told decades ago is normal for withdrawl(sensitive to beef at that time).

My symptoms sorta match what I read and in the past I was diagnosed with:

1. allergy to wheat and oats

2. spastic colon

3. IBS

4. diverticulousis

5. Lactose intorerance

you guessed it, different doctors.

thanks for any ideas

gailc

[mushroom]

Hi, and welcome.

First up, if you wish to be tested you need to resume eating gluten pronto. The testing becomes invalid after two weeks because the antibodies they measure in the blood retreat, and the damaged villi in the small intestine start to heal. If you go back on it right away it may not be too late.

Second, the procedure your are looking to have done is an endoscopy with biopsy, which is not something you can call up and order yourself. You need to schedule an appointment with a gastroenterologist. He will normally want to run the celiac blood tests first and then, if they are positive, he will schedule the procedure (which starts from the top, not the bottom - take the pun if you like ) The doctor needs to take at least six biopsy samples to get a representative sample of your small intestine. (A colonoscopy cannot diagnose celiac disease.)

It sounds like you might already have your answer by going gluten free, if you have experienced that much improvement. Not all testing is positive for celiac, regardless of symptoms. There is such a thing as non-celiac gluten intolerance where you have all the symptoms, but negative blood and endoscopy testing. Regardless of whether the test is negative or positive, it sounds like you are one who should avoid eating gluten. So now you have to decide if the confirmed diagnosis is important to you. I will give you this little warning: you may find you react much worse to gluten after being free of it for two weeks. And yes, we do tend to go through withdrawal if we are addicted to gluten.

If you have damage to your small intestine you may well be intolerant to lactose until your villi have healed, a time which varies from individual to individual.

Good luck, and ask any more questions that come to mind.

[gailc]

Thank you for your reply, another question down below.

Oh, yes, I need to be tested. I have read if you have celiac you are 100 times more prone to colon cancer. In that case I will never eat gluten again. Also I will know to get tested for cancer more often. My symptoms seem to match my father and his mother.

If not celiac I can eat gluten when I feel up to putting up with the symptoms--until I decide not to.

My pains are 20 minutes to an hour after eating and up high (right after leaving the stomach). And also way down low, the last 10 inches or so in two places. The pain usually in the abdomen gets so intense and I tighten up so much it gets hard to breathe and it feels like a panic attack and I sweat all over. It feels like the lactose thing all over again except the lactose pains lasted about 11 hours.

So far all three pain areas have stopped. Also trips to the bathroom are now 3 minutes v.s. an hour before with no results. Sorry to be gross but this is a gross 'disease'--'condition'.

I noticed that a few people have complained of dry skin. The skin on my eyelids have gotten very dry, along with the insides of the eyelids, sometimes when I wake up my eyeball in one eye is stuck to the lid, very painful. Before trying to open my eyes I have to lay there and try to wiggle my eye around until it comes loose then I can finally open my eyes. 5 eye doctors have given me suggestions which don't work. They have their standard answer. I suggested a medicine to one and she gave it to me. Steroids--which I don't like, but it does the job and the problem goes away for months. Since going off gluten my eyes are better but it is really too soon to tell.

I have had a few nose hemmorages, one when I was asleep, the hot liquid running down my face woke me up. Not just a lot of blood but like a faucet has been turned on. Soaked two large bath towels. The last one took 4 hours to stop. Dr. said to use vaseline and he cauterized a different place than where I had to squeeze. I read celiac can cause nose bleeds. The vaseline helped with sneezing itching, tickling, pain and my nose runs less and doesn't bleed when I blow my nose.

It seems like hot flashes have disappeared in the last couple weeks, too soon to tell. Maybe because of the lack of pain.

Do you have any idea of how long I have to eat gluten to make the test valid? I am going to stay off a while longer to see if any other problems go away.

Sometimes fixing one problem can fix many other things.

When I retired my constant dandruff went away, Migranes quit,

shoulder pain stopped(doctors couldn't fix that) back stopped hurting (back surgery three years earlier) and quite a few other things which I could remember if I really thought about it.

About two years ago, after being on a low salt diet for 5 years, or so I thought, I found I was consuming a lot of salt at restaurants and processed food. I don't use a salt shaker and I omit it from recipes. I went on a very low salt diet (tried to get down to about 500 mg) and lost 10 pounds in 4 days 22 pounds in 3 weeks. My Edema went away, my abdomen got flat like a model instead of sticking out like I was pregnant , and I got down to a perfect weight, the doctor was very pleased. A little came off my face making me look older but I can't win them all. My joints which felt like something was in there and wouldn't bend closed now bend all the way and the 'something in there' feeling is gone. I also don't have to get up at night for the bathroom anymore. Since then even though I increased water consumption I feel thirsty often a feeling I almost never felt before. I can drink more now because my intestines are not always bloated--inflamed-swollen with water retention. Thought I would give a little success story along with the bad stuff.

I'm mentally trying to go thru the list of symptoms I read about and I think maybe my hand and fingers have stopped tingling , that would be great.

thanks

gailc

[gailc]

3 weeks gluten free and I haven't had a pain yet. I'll never eat wheat again unless for a biopsy. expensive though.

[mushroom]

Hey Gail, sorry, I missed your last post. I'm so glad to hear that gluten free is working for you. The fact that you have seen such improvement in your joint movement, pain, dry eyes, nose bleeds, maybe even tingling in the hands, shows you are on the right track

Although doctors try to impress upon you otherwise, it really doesn't matter if it's celiac disease or some other form of gluten intolerance; they both do their damage, although it tends to be in different areas often. So keep up the good work. JOB WELL DONE!!!

[gailc]

Than you for responding.

New question, I'll put it at the top so it is easy to find. Any idea of probability of my losing the Lactose Intolerance once on the diet for a long time? Unfortunately I will go off the diet for a test at some time. I'm not willing right now because it feel so good to have the symptoms go away.

Another week and I noticed I no longer have post nasal drip, although I think it was gone when I started the diet, not sure.

But my runny nose quit unless leaning over the computer and room is very cold(furnace went out a year ago). Soon I hope I'll have a new one.

I noticed additional changes in my intestines too, I have been keeping track of activity so several more areas of pain no longer

hurt. I had hunger pains on Monday, I forgot to eat which brings me to another symptom, I'm not as hungry and have lost 4 pounds without trying...Yea!! I'd like to lose about 7 more then have the doctor reevaluate.

Today I noticed my ring is loose, tried the other hand and loose there also. Arthritis relief? I had switched hands a while back when it took great effort to take off the ring. If it gets any looser I will have to resize a bunch of rings.

I also noticed when my hands are cold for a long time, like whn using the computer, they don't hurt. I have had arthritis in my left thumb for 40 years. haven't felt it now in the 3+ weeks on the diet.

I found English Muffins that had yeast. cannot figure that one, I was told it took gluten to make yeast work. Taste maybe. They do taste good. Heavy but good.

I made Chinese stir fry and have been eating that for several days now as a test to see if gorging on veggies makes any difference.

Feel so good for being sick. Could all these changes be due to a sensitivity?When I was sensitive to beef and eggs the only change was diahreah stopped and abnormal blood tests(vitamins and minerals) went back to normal at some point.

gailc

[psawyer]

I found English Muffins that had yeast. cannot figure that one, I was told it took gluten to make yeast work. Taste maybe. They do taste good. Heavy but good.

Yeast can be fed by any carbohydrate, but especially by sugars. Gluten is not needed, and is not even a good source. Gluten is protein, not a carbohydrate.

[mushroom]

. Could all these changes be due to a sensitivity?

Yes, they could. Gluten is one of the sneakiest intolerances, seems to cause more deleterioius activity in more places in the body than all the other sensitivities put together. Other posters, individually or in combination, have reported all the changes that are flabbergasting you.

[gailc]

Thanks,

Oh, the changes were sort of expected.

I meant to ask: if NOT Celiac Disease but just sensitive to gluten would I have all these changes?

I have had sensitivity to beef and eggs in the past and eliminating them only eliminated the year-long diahreah and associated cramps and I assume the abnormal vitamins and mineral counts in the blood work. The doctors were so disinterested they did not bother to repeat the blood work. Actually the first doctor only said 'take a vitamin pill' and ignored the fact that I had diahreah. The next Time I had blood tests done they were normal. I did the work, didn't eat them for 6 months, then I could.

The second time around, years later, with the beef I just quit eating it, that was when we had that mad cow disease scare, we had some of it a few miles from here. I guess about 12 years ago?

I have had more changes since I last posted. I think I am at about 5 weeks now. The unexplained bruises I have had for about forever, small bruises in places where I would expect to see them from my activities except I hadn't bumped myself there, have disappeared. Thi9s is odd since I noticed someone STARTED getting them on this diet.

Tonite I noticed that most of the 'red dots' on my arm (capillaries leaking) are missing. I never had one go away before without being zapped by the doctor.

Intestine function has continued to improve, although I was satisfied with the changes at two weeks it is getting better.

I'm hoping my paper thin fingernails which flake will improve, too soon to tell. They say they grow about 1/10" per month so it will take about 4 months to see the difference.

gailc

[gailc]

I forgot to mention: I frequently choke on my saliva, several times a day; I inhale it. Sometimes it makes me cough for hours. That seems to have greatly improved, not sure when but it was still bad when I started this diet. I've had this for maybe 14 years.

gailc

[mushroom]

Hi again, Gail. I just responded to another of your posts. Yes, all those things you report could be caused by gluten sensitivity. Doctors go to great pains to say that if it isn't celiac it is nothing, but just this year they have started changing their tune and saying there are other reactions to gluten besides celiac, which we have known all along but there has been no research to support it. I used to have bruises all over my hands and arms, but no longer. My skin used to be paper thin and tear at the slightest excuse, but not now. The ridges and lines in my fingernails have gone away. Gluten can do all these things, whether celiac or not (and mind you, I have never been tested so I don't know which I am). I used to have really bad post-nasal drip and that has improved dramatically. I don't care what label you put on what I have, I just would never go back to eating gluten to find out whether or not there was a label, because it is possible that I would not get a label after all that

[gailc]

I don't care what label you put on what I have, I just would never go back to eating gluten to find out whether or not there was a label, because it is possible that I would not get a label after all that

I agree with that, but if Celiac the incidence of colon cancer is so high 100x that I would want to have a colonoscopy more often.

With celiacs is the cancer also in the top part of the colon?--the part they never look at?

Is there a recommendation as to how often to have endoscopy to look for cancer and colonoscopy for same? I would think it would be more often than just 'sensitive'.

I was also hoping if just sensitive that I could cheat on the diet. If celiac I would never cheat. Colon cancer is not an acceptable mode of death for me. I would skydive and take up other dangerous hobbies before that got me.

I am sensitive to beef and eggs. The 'cure' was don't eat them for six months. It worked, but the beef sensitivity came back. I eat eggs a lot, the sensitivity never came back, but the beef did and I just don't eat beef now for that and other reasons.

My other sensitivity is rice, it turns to concrete in me. Feels like concrete with razor blades. But on this diet rice doesn't do that. I'm eating rice bread, rice noodles, rice cookies, and cooking it plain for my stir fry. All with excellent results.

I'm hoping the ridges and flakes and lines and paper thin fingernails goes away like yours. I have also had some splitting. I'm wondering how long it will take to see a difference, apparantly a half year to grow enough to see well, longer to see if the flaking stops

I was told by a plastic surgeon that I have thin skin so I avoid steroids at all costs. They thin the skin...and bones.

gailc

[gailc]

Hi, I'm back.

well about 6 weeks into being gluten free (actually quite easy for me) and a restaurant slipped some soy sauce into my salad dressing. I got to the bottom of the bowl and noticed UH OH dressing kinda tan. cramps before leaving the parking lot. Good I guess that my body tells me if I have eaten gluten.

Then 2 1/2 weeks continuing gluten free and many of the symptoms which had come back, at least the digestive symptoms, were slowly fading.

During all this time I was trying to see a GI doctor at Kaiser who was familiar with celiadc disease. The primary even put a referral to a GI DR. and noted 'celiac'. Trying to schedule a colonoscopy and endoscopy.

They refused to let me speak with a doctor in the GI department, finally I accepted a nurse practioner. All she wanted to know was the frequency of diarrea to which I replied 'I don't get diarrea I get constipated, but being gluten free I have gone from a frequency of 1 1/2 weeks to every day'.

She asked again the frequency of diarrea I responded 'ZERO'

She asked agin the frequency of diarrea I responded 'I don't get diarrea'

I guess there was no checkbox on the computer matching my reply.

And again and I responded 'It has been years since I had diarrea'

She mumbled something about celiacs have diarrea and inplied I didn't have a problem.

Actually less than 50% of celiacs have diarrea but I was beyond trying to deal with this person, and trying to be polite.

I asked if the blood tests needed me to be eating gluten, Since I hadn't eaten any for over two months I was concerned. She said 'I don't know'

I asked about eating gluten before the biopsy and insisted they could do it with a colonoscopy and It didn't matter that by then I would be almost4 months gluten free.

When I relayed this informat to the primary doctor his response was see a GI doctor. Running me in circles.

So later that day I started eating gluten. Small amount at first about 1/4 of a teaspoon of a cookie(by mistake, I was going to wait but I forgot).

Good thing I did it then when I was with a friend who has a celiac niece. My throat started closing, sore throat, ears like water in them or coming down from high altitude, earache and ear clicking, then almost losing my voice. Breathing got labored--a little.

When I dropped the friend off she wouldn't get out of the car. Later I realized whe was waiting for my symptoms to go away. They did quickly and I went to the grocery where I got the stomach cramps as usual.

I did manage to eat wheat until the blood tests but they are not back yet.

I have read 'Celiac disease a hidden epidemic' Dr peter Green Columbia University Celiac center.

and this week I read 'Healthier without wheat' dr stephen wangen of the IBS treatment center in Seattle.

The latter book has answered all my questions. the biopsy for celiac is extremely error prone, requiring experts which I doubt I'll get.

My attitude is now 'SCREW IT i'M NOT EATING GLUTIN' so why bother with any more testing???

so I have decided to go off gluten and not do the 6 weeks (a guess) required for the biopsy to be valid. Have found out otherwise since, but my symptoms show up within an hour so I know I am reacting.

Actually I ate wheat yesterday with no cramps so I don't know what's going on.

The main reason for the celiac diagnosis was you have to be very vigilant if celiac and play by ear if just sensitive--WRONG !!!! If just intolerant you damage your body each time you eat gluten.

So I have my answer. I will put on the consent form 'I will not pay for a celiac biopsy'. Kaiser tells you something is free then sends you a bill 5 months later. I just got a bill this week for my December tetnus shot.

I have had my goodbye beer, cookies, bread, cake, eggplant parmesan, and very odd, none of them tasted as good as I remembered.

Since I NEVER cook with gluten (cooking does not include baking) nor with lactose I am in good shape diet wise. The only cooking I ever put flour into was turkey gravy and I can do without that.

So that is my update, gluten free as soon as I polish off some strawberry shortcake.

Oh yes, I have over 40 symptoms and signs of gluten intolerance, but not the rash. The more I read, the more I find. Too bad 65 years of doctors didn't

gailc

[gailc]

I didn't say it outright so I'll say it now.

I should have just taken your advice and not eat gluten,

no little beer drinking emoticons or I would add one here for you (non-gluten beer that is).

Want to read something interesting??

google 'celiac kaiser' and see mistreatment of patients.

[gailc]

One more thing. I read in the paper on Wednesday a company was selling gluten free bread, but it wasn't. He got 11 years in the slammer for fraud.

[gailc]

> I used to have bruises all over my hands and arms, but no longer. .. I >used to have really bad post-nasal drip and that has improved >dramatically.

Hi, I had the bruises too, mostly legs, they went away on the diet, came bach when went off the diet, since back on the diet they are growing fainter. proof enough for me.

runny nose almost stopped on the diet, came back in a half hour when I went off the diet, not to mention the allergy and shock symptoms.

gailc

[gailc]

My choking cleared up- on the diet, came back when off the diet, has now gone away on the diet.

I'm now waiting to see if the ridges on my fingernails go away. Maybe 6 months to see?