My Doctor Says I Am Just Fine, Then Why Do I Feel Like This?

[ms-sillyak-screwed]

Yes -- Peas are legumes.

Open Original Shared Link I developed a problem to them too.

I'll paste some of it here -- These are beans, peas, peanuts, soybeans, and lentils. Other members of the family lupins, clover, alfalfa, cassia, and soybean.

Open Original Shared Link

[jnclelland]

I just found out that CELESTAL TEAS have GLUTEN in them too (some one posted here on this site). I now know why my tummy gets bloated after drinking it.

I just checked my Celestial Seasonings Honey Vanilla Chamomile, and it says "gluten-free" right on the box. Which ones supposedly have gluten in them?

Jeanne

[Dlapham celiac & DH]

Hi - this is my first post on this board.

I went to my doctor's about a year ago because I had so many unrelated (or so I thought) symptoms that were really affecting my quality of life.

I was diagnosed with Pernicious Anemia about 12 years ago and my hematologist was never able to tell me why I had this desease or how it developed, but have been getting monthly B12 injections ever since. Have been a fitness instructor for 16 years and take my health, and the health of my students seriously.

Last year I went to the doctor with the following:

1. bloated belly -

2. significant weight loss - 20lbs on an already very VERY small frame

3. heart palpitations -

4. hundreds of little red spots that would appear on my legs and arms (kinda like a hickey looks, but all over) sporadically, then disapear and come back -

5. depression -

6. acute sleeplessness -

7. moodiness -

8. irregular periods that had always been regular before -

9. gas and intestinal sounds to the point of mortifying embarassment, but which seemed to be related to when I ate starches or sugars. I got to the point where I almost stopped eating altogether for fear of the discomfort and humiliation. Fasting seemed to cure a lot of my symptoms, but given that I teach, I started dropping even more weight and obviously this was not a viable or sustainable solution.

The dr. prescribed sleeping pills, told me my skin thing didn't sound serious, and sent me for a test: I was so happy that she seemed to take me seriously and would have an answer soon. They gave me a white solution to drink while ex-raying my stomach. Took all of 1 minute.

She gave 100% normal test results. Sent me home saying I seemed fine.

I have been surfing the internet looking for answers and found this site - I cried when I saw that there are studies linking pernicious anemia with celiac disease, and that my "unrelated symptoms" didn't seem so unrelated after all.

I have tried fasting, colon-cleansing, detoxing, parasite pills....and am desperate, nothing is making me feel better. Can anyone tell me if my symptoms sound like celiac disease?

Hi Robix,

I am a 59 year old male, but I found your description of your symptoms and the solution to the problems with eating interesting because I had many of the same symptoms, and I had the same solution, don't eat, and the same results, I felt better but lost about 35#s in 3 months. I also have been diagnosed with pernicious anemia and took WEEKLY B12 shots, for 2 years, with no improvement. I also have had anemia induced by dapsone and c/d.

Now after 6 months on the gluten-free diet, my weight is back to normal, my red count is in normal range and the pernicious anemia is almost gone. That is the red cells are smaller and very close to the correct shape, and this is without the B12 shots since I started the gluten-free diet.

If a doctor will not test you then try the gluten-free diet for a few months to see if it helps, if it does, forget the testing and just do what helps. I cannot pay the cost of the tests and since they are not able to detect the disease is all cases, I chose to do what my common sense led me to do. With the help of this web site and the internet in general one can make some pretty well informed decisions about their health care.

[ms-sillyak-screwed]

I just checked my Celestial Seasonings Honey Vanilla Chamomile, and it says "gluten-free" right on the box. Which ones supposedly have gluten in them?

You are right. I just went a read the box of tea and it says Gluten Free. I read it had gluten in a thread here on this site. I will go and find it. I just looked and I stand corrected. I'm not sure why but I have a reaction to it also. It might say gluten free but it could be processed in a plant that has wheat or other products that might cross contaminate it. The other thing I noticed it listed NATURAL FLAVORING. BEWARE! That can have any number of things that are hidden. We need to contact the company and ask what is in their natural favoring to ge safe.

Enjoy your tea... perhaps it's just me I'm hyper sensitive to everything.

[nettiebeads]

I just checked my Celestial Seasonings Honey Vanilla Chamomile, and it says "gluten-free" right on the box. Which ones supposedly have gluten in them?

Jeanne

The specialty teas that Celestial Seasonings puts out at holiday time are made with roasted barley. Their normal line is gluten free. But of course, you can check the labels each time you pick up a box.

Annette

[Robix]

First off - I want to tell you all how grateful I am to have found you. Since reading your replies and reading through the site (I have become a bit obsessed with the site! LOL!) I have learned more in a few days than I have in visiting my GP and Specialists in the past 14 years.

You guys are amazing people - and your support and information may have changed my life forever. I thought I had cut out gluten until I read thru your posts.

I also discovered a whole bunch of symptoms are related to celiac disease, which I just attributed to other things, like night sweats, the stump feeling in my legs and feet, tingling in my face, dimming eyesight, paper-thin nails, waking up with a swelled up face for no reason (my boyfriend was sure I kept being bitten by spiders!), etc.

My 5 yr-old son had severe colic as a baby and has been underweight and a fussy eater ever since (he routinely refuses food for days in a row - his pediatrician kept telling me, "don't worry, kids don't let themselves starve to death, one good meal every few days is ok) AAACK! His daycare teachers used to ducktape his pants around his waist to keep them from falling off.

My mom suffers from severe migraines, 3 debilitating migraines per week, for her whole life, thin hair, brittle nails (they are wavy if you can imagine), and she has a lot of trouble healing from scrapes and bruises (like me).

I am wondering if we don't all have celiac. I am trying to have myself tested, and if I test positively, then I am having my whole family tested.

On the plus side - my boyfriend is taking me to NYC on wednesday for the weekend, and as far as I know I am allowed as many oysters as I want, and as much champagne as I want....right? (and by then will be off my antibiotics!!!)

Am trying to be positive and look at this as an excuse to have my boyfriend buy me the most expensive stuff on the menu! He he he!!! Lobster is gluten-free right? As is caviar?

Ever notice that pizza and pasta are the cheapest things on the menu??? Well, I am officially a low-maintenance girlfriend no more! Hello high-maintenance!

[jerseyangel]

Robix--That was too funny! Have a wonderful weekend. PS--Glad you found us, too

[Robix]

INTERESTING DEVELOPMENT!

Had lunch with my mom today and told her about all my symptoms and celiac disease and everytime I have brought it up in the past month she has looked at me with a puzzled and doubtful look (like I am being a bit of a hypochondriac). Today she said to me "you know, your brother just told me that he is having so much gastro-intestinal distress that he is seeing a GI too." Geee, is it in his head too? He he he.

My brother and I aren't that close, so we would never discuss something like that. Interesting isn't it? Wouldn't it be funny (in a not funny way at all) if we were both diagnosed at the same time, but never knew about each others problems?

That was the straw that broke the camels back for me. I am having my son tested ASAP. Hopefully a 5 year old will be able to see a GI faster than I can (4 month waiting list).

[eleep]

Okay, I just want to say that I'm a little jealous about this boyfriend/oyster thing -- my boyfriend and I are "separated" partly because of all this celiac stuff (and partly because we're trying to figure out whether we want to get married) and I'm having nostalgic feelings about time we've spent on the Gulf coast of Florida gorging ourselves on oysters.

And gulf oysters, by the way, aren't recommended for anyone to eat right now as far as I know. Not after all that stuff they pumped back into the gulf after the hurricane.

[jerseyangel]

Robix--That IS something! I wish the best for all three of you

[Robix]

EVEN MORE INTERESTING NEWS!

I called my brother to ask him about his GI symptoms, and he said that he went to see a GI one year ago

and the GI "thought that maybe it was IBS."

But he didn't do any testing or treatment.

!!!!

Can you believe it? He got a "gee probably IBS, that sucks for you" diagnosis from a doctor.

I could scream. Now my brother's symptoms are so bad he is in pain and wants to go back to his GI for more testing...

I asked him to be specific and get tested for Celiac.

Sigh. Is it just me or are doctors just enormously disapointing.

[Robix]

Okay, I just want to say that I'm a little jealous about this boyfriend/oyster thing -- my boyfriend and I are "separated" partly because of all this celiac stuff (and partly because we're trying to figure out whether we want to get married) and I'm having nostalgic feelings about time we've spent on the Gulf coast of Florida gorging ourselves on oysters.

And gulf oysters, by the way, aren't recommended for anyone to eat right now as far as I know. Not after all that stuff they pumped back into the gulf after the hurricane.

Hi Eleep - sorry for not responding sooner, sorry to hear about your boyfriend. I have to say that my new boyfriend is amazing for putting up with the decidedly unsexiness of my gassy belly. He is 10 years younger than I am, and sexy and has lots of hot young gals in his circle - and for the life of me I can't understand what he sees in me, a single mom in her mid-thirties with gross tummy problems.

I am so enjoying the attention and romance for once in my life, and the oysters (canadian oysters!), but please don't be jealous...am sure when he dumps me for a hot young thing with a flat and noiseless belly, that I'll come crying to this board and I'll be envious of you! But for the time being, I have to admit to shamelessly enjoying every minute of it.

I just wish I could enjoy it without the mortification every time my tummy makes those grinding sheet metal noises. And every time I beg him not to touch me because my tummy is too tender or every time I turn away from him at night, not because he isn't attractive, but because I feel so horrible and gassy. He's already starting to push back on this - so really, I guess Celiac is a hard thing to deal with for all of us in intimate situations.

Somehow we just need to make the best of it all...

[ms-sillyak-screwed]

Robix -- Glad to hear you are speaking with your brother about celiac disease.

Yes, doctors don't get it and men have an even harder time wrapping their heads around the concept. Maybe this awful illness can bring you closer together in some strange way. As time passes and you help him heal, I pray his love for you will grow.

Make sure he gets tested with gluten in his system, because he will get a false negative if it's not in his system.

I was DX's with IBS and Spastic Colon (6yrs ago) cause the doc was a class act dummy. I had a colonospy (sp) and asked the doc to do the biopsy test. Guess what -- he never did it even though I asked. He didn't know what he was doing and got mad at me in front of my 85-year old daddyO when I quizzed him on celiac disease. His partner later told me I have celiac disease. Don't believe anything these doc's tell us. They are clueless. Don't feel bad, it's all part of celiac disease. Stay tuned in here. The people on this site are wonderful and you can gain a lot of support and knowledge here.

Be well!