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

[Robix]

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?

[key]

SOunds like it could be celiac. You could try and change doctors and get the full Celiac blood panel done. It would be good to go ahead and have the tests done. If you can't find a way to get them done, there are alot of us here that ended up going gluten free with inconclusive test results and had much relief! THere are all sorts of things to avoid if you go gluten free, so make sure you check over the list here.

I would try and find a new doctor though that is well versed in celiac and have the blood test done and maybe a biopsy too.

Sorry you have suffered so long without an answer. There are many people here that have been sick for years before finding out. It is very sad.

GOodluck,

MOnica

[par18]

My family doctor said he only had two cases in his career. Mine which had the classic symptoms (diarrhea, malabsorption, weight loss)and one other in which the only symptom was anemia. Have you tried a gluten free diet? If so for how long? It was my experience that once I started the diet my symptoms improved immediately. Since the only treatment is the diet I would suggest starting it immediately. In order to do this you need to know exactly what gluten is and how to avoid it. I ate mostly naturally gluten free foods in the beginning and abstained from dairy for a couple of weeks. Good luck.

Tom

[plantime]

Go back to your doctor and request a celiac panel and biopsy. It could be that your doctor thinks celiac is extremely rare, and has just not looked into it. If you can't get the tests from your doc, then go to another one. If you don't want to mess with doctors and tests, just try the gluten-free diet for a couple of months and see how you feel. Many folks on here do not have a doc's diagnosis, but know that they feel so much better gluten-free.

[nettiebeads]

It so sounds like celiac is a definite possibility. What is your ethnic background? Anyone in your family complain of tummy problems? Celiac is the great pretender of all of the autoimmune diseases. With 200 symptoms it can be hard to dx, and then there are some who are asymptomatic who have celiac! If you have been regularly ingesting gluten products, then go ahead and find a dr who is willing to run the full celiac panel for you. If you have been fasting or significantly reducing your gluten intake, the tests may be skewed. Then you would have to go back onto gluten heavily and for quite a while and even then there would not be a guarantee the the tests wouldn't come back with a false negative. Or you can do what other people have suggested and do the diet challenge - go gluten-free, see how you feel after 3 weeks or so, try something with gluten and monitor the results. I was dx'd with just the diet challenge alone by my then gp and all of my drs since then have accepted the results. (except for one - she didn't know a thing about celiac and it was obvious). Cutting out diary was mentioned - that is a good idea too. If you do have celiac, then the villi have been damaged and can't produce the necessary enzyme for digesting diary. You can probably reintroduce it in 3 months or so.

Good luck, keep us posted, and please don't hesitate to ask questions. We've all been there and we understand.

Annette

[Guest BERNESES]

Robix- Your story and symptoms sound familiar! I don't think ANYONE should be dismissed when they have lost 20 lbs unintentionally. Your symptoms sound very much like mine did when I first went to see my GP. She looked at me and said it's probably one of two things- Celiac's or a thyroid problem. thyroid came back fine- Celiac antibodies slightly elevated so I went gluten-free (not realizing you shouldn't do that before a biopsy). The first GI i saw said he had NEVER had a patient with Celiac's before- it was very rare. Wrong! It's estimated that more than 1 in 133 people have it. No matter what- get yourself tested and taken care of. Let us know how it goes and what we can do to help. (((Hugs))), Beverly

[Guest nini]

It definitely sounds like Celiac to me, keep in mind if you opt to go through testing that even if you do have it, the test results can still be falsely negative... My personal recommendation would be, since the only treatment for Celiac is the gluten-free diet, to go ahead and try the diet... give it at LEAST six months before you decide if it's working for you or not. The diet and how your body responds is the most accurate way of dx'ing this. You do not need a Dr.'s permission to go on the diet, and if your health starts to improve, BONUS! Some people will tell you that you need to be tested so that you can confirm damage, I don't believe this is true. You need to listen to your body. You may have other intolerances as well, most commonly associated with Celiac and gluten intolerance is Lactose intolerance, but many are sensitive to Soy as well. Keep a food journal, read this site and learn all the hidden places gluten can hide...

[Robix]

Thank you everyone for responding. After spending another night of humiliating gassy pain (with my new cute younger boyfriend...talk about not feeling or being sexy....how does anyone deal with the embarasssment of the symptoms?) I went and spent 3 hours at the clinic today.

He made me say "ah", checked my lungs (???) and then asked me if I ate a lot of beans.

No joke. I swear to god. I wouldn't even try to make up anything so ridiculous.

I asked him point blank for a GI referral and didn't even bother saying anything else.

He filled out his little piece of paper for a consult, but it didn't have a name or anything on it, so I guess I have to research and find one on my own? GGGGGrrrrrrrrrrrrrrrr. Am so upset.

Is there a Canadian listing for GIs specialised in celiac disease? (am a montrealer).

Thank you !

Go back to your doctor and request a celiac panel and biopsy. It could be that your doctor thinks celiac is extremely rare, and has just not looked into it.

Thanks Dessa - I did. I went to the Dr first thing after reading your post.

It so sounds like celiac is a definite possibility. What is your ethnic background? Anyone in your family complain of tummy problems? Annette

Annette,

I am french-canadian of mixed origins, probably some first-nation heritage and some scottish, Irish and French mix as well. Also - my son had severe colic for his first 4 months, when I cut starches and dairy (breastfed him 12 months), it went away. Could he have celiac disease also?

[kelliac]

Robix, your story sounds too familiar. How many people seek help from medical professionals to be told it's nothing. Just yesterday, a dear friend of mine saw her doctor, mentioned her positive genes for gluten intolerance DQ1, subtype 6 (per enterolab) and was told "Gluten Intolerance is NOT celiac disease so go ahead and eat all the wheat and gluten you want." She was so excited to hear that she could have her favorite foods again she stopped for a donut.

People trust doctors and look to them for sound advice. With all the recent research on gluten intolerance being the big picture and celiac being just a portion of that, you'd think that doctors would be learning about the significance of being gluten intolerant period. Needless to say, she became violently ill after her donut. She just went gluten-free in the past several months (after a lifetime of diarrhea and miscellaneous other symptoms) and was doing so well!!! She finally went off prednisone. Trying to stop the remicade. I think she got the picture when she reacted so violently to gluten yesterday after being told it wouldn't make her sick. No doctor can tell her it doesn't make a difference. Her body told her differently.

Back to your experience at the doctor, I'm sorry to hear about what happened. As I have mentioned on previous posts, I cannot say enough good things about the genetic testing at enterolab.com. It gives you a confirmation if you have the gluten intolerant genes or celiac genes, and that in itself is a relief to know something.

I personally was diagnosed celiac through biopsy, was told by that doctor that sometimes biopsies are wrong, was retested and still came up with damaged villi, then blood tested (after being gluten free) and those results were negative. After a year of going on and off gluten-free diets per the different doctors advice, I saw a doctor that told me in no uncertain terms to go gluten-free. I did that day and never went off since then.

Even with positive biopsies, positive dietary responses, positive family history, I was still in denial I guess. I ended up doing the enterolab testing and when it said double gluten intolerance genes, I realized both my parents had gluten intolerance and I indeed had to stay gluten-free. Since that time, many more family members have been tested and every single one has double genes. Even my husband has one celiac gene and one gluten intolerant gene. His parents are double carriers as well. All our children are doubles. It is like that old commercial that goes "and so on, and so on and so on." Sad but true. Wishing you nothing but good things. Stick with celiac.com. There is a lot of great advice by people who live this and understand. Hang in there.

[Nancym]

This is the one disease where you can treat yourself without ever seeing a doctor. Have you considered giving a gluten free diet a good 2 week trial and seeing how you feel? A lot of people just go by their own diagnosis. I think it really makes sense given that doctor's are unable to diagnose non-celiac gluten intolerance.

In fact, that is exactly what I did. I went gluten free for two weeks and knew I would never go back. Later on I did the Enterolab testing to get confirmation and I'm glad I did, because I found out dairy is a problem too.

[Robix]

This is the one disease where you can treat yourself without ever seeing a doctor. Have you considered giving a gluten free diet a good 2 week trial and seeing how you feel?

Well - I somewhat did go "gluten-free", but hard to tell as I didn't just abstain from gluten. I fasted and abtstained from pretty much everything. The irony was that it was the first time in two years that I felt GREAT (if a little hungry). I have to admit that it wasn't a complete fast as I had 6 almonds in the morning, an apple in the afternoon, and then 6 cashews and a 1/4 cup of plain lettuce leaves for supper. Some days I had only water. Being a fitness professional, I was expecting to feel tired, grumpy, depressed...but I actually felt the best, healthiest and most energetic than I could ever remember. Problem was that I became so skinny that all my friends and family became concerned I was anorexic - but I was too embarassed to tell them the truth...how does one talk about "bathroom" issues around a dinner table? For the first time I could remember my stomach was silent. No gas. No pains. It was beautiful freedom. I could wear what I wanted (no more bloated belly) and be social without being self-conscious. I even started dating again. Going to bed with someone new was finally possible!

As soon as I started eating again - terrible pain, bloating, gas and all the rest of it. I just can't identify for sure if it was gluten, or dairy, or both, or something else? And I have tried to cut out gluten, but am learning it hides everywhere. Am tempted to fast for a few weeks to just clear it all out of my system and start fresh.

Q? Does anyone have any information on fasting and its benefits/hasards for people with celiac disease?

Q? Also - doctor did find that my lypmh nodes were hard and swollen, and one so enlarged that he prescribed anti-biotics - he thought just some kind of infection. Could this be related or just a fluke? Also - yippe, anti-biotics are so great for the digestive system (NOT!) does anyone have any advice on minimizing its impacts?

[ms-sillyak-screwed]

Robix -- Some others here might agree or disagree with me on this and might they might know more about it then I do. But give it a try and stay away from GULTEN, SOY, DAIRY and LEGUMES (they are soy family). Eat protein veggies and fruit.

I know about the gas embarrasment. It happened to me too out with people one night I wanted to die when all eyes looked at me.

[Nancym]

but I was too embarassed to tell them the truth...how does one talk about "bathroom" issues around a dinner table?

LOL! In my family this wouldn't be a problem. We're earthy folks.

I think your fast gave you your answer. Now try eating on everything except dairy and gluten and see if you feel as good. Chances are you've probably got some pretty badly damaged intestines and you might want to try out a diet like SCD to get things healed. See breakingtheviciouscycle.info for details.

[ms-sillyak-screwed]

Great book it helped me too!

[tiredofdoctors]

Robix -- unfortunately, your experience isn't unusual. I finally got things going because of my eye doctor! I think you need to get a new doctor -- this guy sounds like an a$$. Can you go to a GI doc without a referral? I wish you all the luck --I know it's a hard journey, and you see a LOT of doctors before you get help. This forum is a great help, though. Also, I HATE hearing, "I can't believe you're sick -- you look GREAT." It makes me want to throw up. What they don't know is that it took 3-4 hours for me to look that way. And, when I go home, I'm going to crash & burn. Sadly, you get used to it! (((hugs to you))) Lynne

[nettiebeads]

Annette,

I am french-canadian of mixed origins, probably some first-nation heritage and some scottish, Irish and French mix as well. Also - my son had severe colic for his first 4 months, when I cut starches and dairy (breastfed him 12 months), it went away. Could he have celiac disease also?

[Robix]

I told the pharmacist "No allergies" as usual, then said "um, Gluten?"

The pharmacist said that so many meds had gluten in them, that she wanted to take her time to check. She took 10 whole minutes to check both my anti-biotics (and found gluten-free substitutes) and even checked the pro-biotics for me for both gluten and lactose.

Thanks a million guys - if it wasn't for this board, I can't imagine how sick I would have felt from the combination of anti-biotics, dairy and gluten...

And what was nice was that the pharmacist took it very seriously.

PS. She also gave me a pamphlet on "gas" which listed all the complex sugars that cause gas: in the top ten were peanuts, peanut butter, soy beans and tofu. Now what can I eat? Take out dairy and eggs and I have only seeds left (am mostly vegetarian).

Are there any postings for gluten-free as a vegetarian that excludes dairy and soy???

[ms-sillyak-screwed]

Robix -- I went through this too. Find a COMOUNDING pharmacist for your medication. They will make what you need with out the binders with Gluten, Corn and etc.... That's what I did and it helped a lot.

SOY IS POISON!!!!

I just went through something today I'll share with you.

I have been buying package tuna for the longest time it listed

INGREDIENTS: Light tuna, water, VEGETABLE BROTH *, and salt.

I called the manufacture of the food and it took me all day long.

I found out VEGETABLE BROTH * is SOY.

Now I know why I'm not getting better.

[Robix]

Funny,

I had "lunch" with a friend of mine today (okay, she had lunch, I had green tea for fear of being hurt by the food). And was telling her I suspect I have Celliac. She said to me, "yeah but you don't eat starches anyway, no big deal" .

I tried to explain, "actually gluten is in everything, even meds and tuna" (I remembered your post!) and she practically rolled her eyes at me.

I could see it by the expression in her eyes...she was thinking "picky eater, victim, all-in-her-head, exagerating"... It was this totally "whatever, I'll humour her" kind of looks.

It was WAY easier dealing with people suspecting I was anorexic than dealing with that kind of attitude. I'd rather have someone comment on my skinny-ness, than have them roll their eyes and look annoyed.

I think from now on I will simply stay with the "I'm not that hungry" excuse.

Keepin' the gluten-thing to myself for now!

[nettiebeads]

If she's your friend, then why wasn't she more concerned for your health? Some people would rather remain ignorant. It's easier for them.

Try the triumph dining cards. It'll help.

Annette

[Robix]

Annette,

what is a triumph dining card??? Sorry, am so new, I don't know anything about this yet!

[ms-sillyak-screwed]

Robix -- FYI Green Tea is BAD for those of us Celiac'c with thyoid problems. I drank it like crazy thinking it was good for me, when in fact it cause manor damage to my thyroid along with SOY. As far as your friends --- nettiebeads --- is right.

I know all too well about the ""I'm not that hungry" excuse" I use it too. I eat before I go out cause CC is a big factor too. It gets in the way of a lot of things, if we let it... [easier said then done]

I go through this all the time also. It will make you feel crazy. But you're not! They are [CRAZY] for not opening up their little minds. Celiac disease kills and if they love you or at least care they will understand -- if not now someday at a funeral.

When my auntie (on a feeding tube) died I talked about it in her eulogy and it added it in her obit.

I get seizure from toxic foods or medication with gluten, corn and dairy. Soy is my enemy too. And I tell people all about it. I have vowed to spend at least 10 minutes a day to talking to strangers about celiac disease. I did it today and do every day. It has become fun for me... I get off on the things they say.

Know that we care about you here.

[Guest BERNESES]

Robix- Hang in there! You wouldn't believe how many of us have been told it's all in our heads either by doctors, friends or family. Grrrr! I think you've gotten a lot of good advice here.

If you are going to opt to go the medical route, don't go gluten-free before the biopsy. And know that if you do go gluten-free and then decide you want confirmation via a biopsy you will have to eat gluten again (it's called the gluten challenge- challenge is putting it mildly!).

if you decide you don't need confirmation via tests then just go gluten-free and see how it goes. So many people here are self-diagnosed and there is nothing wrong with that. I remember my GI saying that I didn't have Celiac's and that he didn't want to "condemn" anyone to the gluten-free diet without proof. i was like "Yeah, right" so I said to him that the gluten diet was recommended for IBS as well. He said it was and of course, like Ii knew all aalong, I found out I did have Celiac's. Keep us posted. (((Hugs))), Beverly

[Fiddle-Faddle]

Are green peas legumes? (Sorry if that's a dumb question--I made them for dinner tonight, and my tummy's all bloated and crampy and I KNOW there was no gluten anywhere in sight! I never thought of eliminating legumes.

Green tea? I didn't know that one, either--I've been drinking a cup a day sinced September (and I'd hardly ever drunk any caffeine-containing beverage before that in my whole life!)--I thought it was healthy! Oh, no....Please don't tell me chocolate is a legume, too....

[jerseyangel]

FF--Yes, peas are legumes. I am sensitive to legumes--I'm ok if I eat them no more than once a week or less. Peanuts, too But chocolate is just fine