OH YEAH!! THANKS TO THIS WEBSITE!

azsidewinder · Joined: 08 Aug 2008 Posts: 3 Location: Phoenix, Arizona

I have had massive medical issues for the past 6-7 years. I mean from seeing almost every doctor on the planet it seems, and taking every pill they easily prescribe to me as well as psycho doctors because of anxiety.
Midnight ER room visits and being diagnosed with SVT, DVT and a pulmonary embolism in April that almost killed me.

I have take Coumadin, Lovenox stomach shots to keep blood thin. Ive just felt really bad, constant fatigue. My life just hasn't been the same for the past 6-7 years and I really couldn't figure why, I am a 46 YO smoker so I figured it was natural if I smoked I was going to be sick.

Anywho, thanks to accidentally running across this site I have finally determined after some minimal eating tests that I am Gluten intolerant at the very least, maybe full celiac.

In April I had the embolism so I immediately started trying to watch my foods by leaving out the fast food and increasing my whole grains intake, IE shredded wheat etc... with no positive results. I was a fast food guru and a big beer drinker prior to the embolism.

In the past 4 days I have tried the gluten free diet, instantly have felt better!!!!!!!

Lots of aches and pains have decreased, Ive felt my heart rate slow when I normally had to take Atenenol. Which I decided 4 days ago not to take for awhile to see. I was also taking nirivam to suppress my panic attacks, this was so bad I had a constant feeling of at any moment I would go into a full PA. Constant fear. Although my cutoff date for smoking is the 15th of this month, I have followed the diet completely, ZERO gluten!

I feel great, my bad attitude has lifted and life feels good. Im a little nervous that maybe because I have started eating more fruit that it is the reason I feel better and not actually because Im gluten intolerant, but regardless I am going to go gluten free for this whole month and see how I feel. Keep your fingers crossed since I am!!

Thanks GluttenFree.com for your enlightenment. I went out today and bought the Gluttenfree for Dummies book today, its like a best seller I cant seem to put it down, everything it talks about seems to relate to me, its unbelievable!!!!!

Ill definitely be around here Im a rookie and will most definitely need some direction!

cruelshoes · Joined: 23 Sep 2005 Posts: 2550 Location: Washington State

It would be really great if a simple diet change was able to resolve your serious medical issues. Discovering celiac or gluten intolerance has clearly had life-altering results for many of us, myself included. I think it might be a good idea if you talked to your doctor before altering any of your medication doses, however. That's serious stuff and should probably be supervised by an MD.

If you want to get tested for celiac, you have to be consuming gluten. Removing it from your diet before testing is complete and can result in a false negative.

Let us know how we can be of help.
_________________
-Colleen
Dx 8/05 via bloodwork/biopsy
10-YO son Dx 11/05 via bloodwork/biopsy
Daughters (12 and 2) have neg. bloodwork

A woman is like a tea bag-you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

azsidewinder · Joined: 08 Aug 2008 Posts: 3 Location: Phoenix, Arizona

I hear what your saying regarding checking with a doctor, however.... AFTER all Ive been thru especially from the panic attacks I cant tell you the relief Ive had from this the past 4 days, its miraculous actually.

The way I look at it is Id rather be dead than to keep taking meds I truly dont feel benefit me at all. Im not really that rebellious, I am taking all this with some caution and concern, but personally I feel the American Medical Association and the Food and Drug Administration are more a part of the cause than the cure. The meds they have had me on are absolutely unbelievable, and once Im prescribed these meds I research them and am scared to take them, also I have had really little benefit from the meds. Ive been on so many meds I cant even remember the names anymore.

I thank God I found this site and from the book Ive been reading all day it is apparent that others have had major negative results from the doctors they trust. Im not saying doctors arent needed I just think they should look at more natural ways of healing instead of pushing the pills the reps flow through the waiting room with first.

I was talking to my wife tonight and mentioned that in the television show House they seem to try to get to the root of the problem, from the doctors Ive been to they are to anxious to grab the RX pad first.

Doctors are good for alot, but for me they have been useless and essentially left me to fend for myself. When I got my blood clot they gave me phenynol (spelling)to relieve pain my ears swelled up 3 times larger than they are normally. I was also only in the hospital 4 days after the clot to the lung.

All my meds other than the coumadin are as needed. The coumadin I take daily 6mgs and have since April the 9th of this year. So far my INR readings have stayed between 2.5 - 3.0 which is therapeutic.

I just am so thankful to have found my problem, NONE of the doctors Ive been to even tested for this, Ive never even heard of this until 4 days ago.

I do however have an appointment on Tuesday.

Fidissimus · Joined: 17 Mar 2006 Posts: 1569 Location: Portland, OR.

It's just a few more days - you should really try to keep eating gluten at least until they can run the blood work. A biopsy is preferred for official diagnosis. Remember, going GF is a LIFE LONG commitment for better health. I can see that you're really excited (I was too - I woke up on day 3 a whole new woman!) BUT I would strongly encourage you get a dx so you know where you stand with either being gluten intolerant or Celiac.

Also Atenolol is a beta blocker. I wouldn't stop taking it abruptly because it can cause blood pressure spikes. You could decrease the dosage gradually. In general not the nicest drug in the world to be on (I took it for a few years) so I can understand wanting to get off it quickly! Still - best to confer with your doc on that one.

A few more days! Hang in there. Wink

_________________
Cheers!
Jenn

GF BD: Feb. 2001
Free of wheat, barley, rye, oats, dairy, eggs, almonds, pineapple and brewers yeast.
http://graindamaged.blogspot.com/

celiacmaine-iac · Joined: 19 Dec 2007 Posts: 702 Location: Maine

Hi sidewinder. I too had a DVT and pulmonary embolus about 10 years ago. I'm really concerned that you are making big changes to your diet while on Coumadin without discussing it thoroughly with your doctor first. I was instructed when I was put on Coumadin how necessary it was to keep my diet very consistent when on Coumadin. Certain foods contain very high amounts of Vitamin K. Some contain small amounts. When I left the hospital they really stressed how important it was to keep my diet consistent. It didn't mean I had to stop eating the foods that were high in vitamin K, I just had to eat the same amount of them every day. Big changes in my diet would mean a potential for trouble. I obviously don't know what kind of instructions you were given, but again, I cannot urge you strongly enough to discuss this with your doctor first.
_________________
Steph

ostrich · Joined: 30 Mar 2006 Posts: 4170 Location: Nebraska

I know you have a jaded view of doctors. You're right: there's lots of stories on here about how most doctors "just don't get it". That being said, they're doctors for a reason. And, more importantly, we are not. I understand feeling better and being excited. I was bouncing off the walls! But please, please bring this up with your doctor. If anything, at least it'll be put in your medical records.
_________________
Ostrich :>--O==={

I lie below, you float above
In the pretty white ships that I am dreaming of

aklap · Joined: 02 Oct 2004 Posts: 8607 Location: WI, USA

Hi Sidewinder,

Welcome to the board! I am glad that you are seeing improvements with the diet change. I agree with the others - try to get some testing done! Here's Our Thread on Celiac Blood Tests & More Diagnostic Info. It's not always easy being in "no-mans land" when it comes to this. Trust me...I live there every day. Do you have the resolve and the commitment to stay 100% GF? Some people can do this without an official diagnosis, some can't - it just depends on the type of person you are. You might check out these threads: Suspect CD, is dx worth it?
Compelling reason to dx by biopsy Biopsy or Not to Bipsy - That is the question.

Also - I agree with everyone else - do not mess with your meds without discussing it with your doctor. You are playing with fire and can get "burned".

Good luck! Please keep us updated!! Looking forward to hear more from you.
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

azsidewinder · Joined: 08 Aug 2008 Posts: 3 Location: Phoenix, Arizona

I appreciate all your advice, but you all have way to much faith in doctors. Personally I think 90% of them don't know there butt, well you know the rest. Very Happy

I really don't know if this is the answer or not, but as Ive tried to tell you Ive been to lots of doctors in the past 7 years, NONE of them give a crap. They rush in and rush out and barely know your name. When you ask them about a symptom they don't know about they send you to a shrink that only wants to give you pills. Its sad actually. All they care about really is my copay and whether my insurance card information is current. They want me there on time regardless if I have to sit in the waiting room over an hour or not.

Initially I went along with the program after the embolism, but I am not feeling any better with anything they do for me. I'm going on day 5 now I overall feel excellent. Ive noticed my feet swelling is reduced big time, I cant remember when my feet looked so thin. Ive also had a really bad water blistery rash on my palms and fingers, that has been getting worse over the past month, since I started this the inflammation on my palms has drastically been reduced.

I do plan on talking to the doctor about this but he doesn't care. Ive been to 3 different internal medicine doctors and their attitudes are all the same. POOR! The issue I'm going thru is firing another doctor doesn't seem to help and my insurance company isn't to thrilled with me when I keep switching doctors.

I appreciate all of your concern but Ive been researching this stuff for a few years and at this point its the only thing Ive found relief from my panic attacks.

My meals consist of chicken, fish, lean hamburger, watermelon, canalope, and lots of water and not from concentrate 100% fruit juices.

I take apple cider vinegar, gluten free fish oil, and cayenne pepper 100,000 HU.

Ive just cut out all processed foods and have tried reducing all salt intake, all of the foods above contain some salt so Im getting that in my diet.

Ill keep you updated on the progress but personally my faith in the medical industry is very low. After 7 years of dealing with doctors I really believe there is better ways to feel better.

These changes Ive made are drastic compared to my lifestyle prior to my embolism.

I cut all fast food out of my diet, including all restaurant food actually other than salads. 99% of the time I eat at home. Stopped drinking all alcohol which was big for me since Im a party guy and sports bar hanger.

None of these changes made as much a difference as gluten free, and so quickly. I know its not coincidental.

The atenenol is a beta blocker but is 20mg tabs and I take these only when I have a panic attack and usually break the tab into 4 quarters. The shrink gave me nirivam about 3 months ago so that really replaced the atenenol. All I have stopped since finding this solution is nirivam. OH this also contains gluten. My wife says I look better and the dark circles under my eyes are going away and my whites look alot brighter. So for me at this point the benefits out weight the risks.

What I was living prior to finding this site was not a life, I haven't felt good in a long time, so for me, this is the direction I'm heading, it probably isn't the way some would do it, but I also could find other websites that would agree with me that doctors and pills aren't the way. Major lifestyle changes have to happen to achieve success.

If we were all talking in a room together this might all come out better, typing all of this I know Im leaving a lot of things out of the explanations.

I walked 4 miles last night, I haven't been able to walk more than 1.5 miles since I came home from the hospital.

aklap · Joined: 02 Oct 2004 Posts: 8607 Location: WI, USA

AZ,

I can understand your frustration with the medical community - we've all been there - done that! We all have our own stories to tell. I've been angry, I've been frustrated. It is something you need to go thru. However, you will find that anger will get you no where. If you let it consume your life, it will eat you up and spit you out! The sooner you get past this stage - the better off you'll be.

You may not have much faith in them now - but let's see how much faith you have in them the next time you're in the ER. Let's see how much faith you put in them if you've been in a car accident and they hold your [or a loved ones life] in their hands. Doctors are not perfect [as much as they think they might be], they are human, just like you and I. Should they know and care? Yes. Do they? Not always and not all of them. They don't [can't] know everything, but they do have knowledge, talent and skills that need to be relied upon. Personally, I feel we [the patients] and they [the doctors] must work as a team to better our health.

Because this disease is so often misdiagnosed and overlooked - we the gluten intol community must work together to educate not only ourselves and others struggling to find answers, but the doctors and those in the medical community as well. This is one of the big reasons I have devoted so much of my life to several discussion boards, and a support group. We can be part of the solution or part of the problem. If we're not out there helping to "Spread the Word" - we're part of the problem [IMHO Wink

].

Perhaps you need to see a doctor that is familiar with CD. I'll see if I can find some in your city.

I think you can certainly understand the countless reasons that we [who are not doctors] just can't tell you to go off your meds. If you choose to do that - that's your business.

I hope you continue to see improvements in your new found health!! Just be careful OK? Smile

Here's to a 10 mile walk!!
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

aklap · Joined: 02 Oct 2004 Posts: 8607 Location: WI, USA

You might check with these support groups in your area. They might know of good CD docs

Southern Arizona Celiac Support Group (CSA#15) - http://www.southernarizonaceliacsupport.org/index.html
The Gluten-Free Celiac Group, AZ - Phoenix/Chandler (GIG) - http://www.glutenfreegroup.com/ - this page is not working. You might try this contact:

Phoenix:
Gluten-Free Group
email: contact GIG@gluten.net
for more information

Celiac Support of Greater Phoenix - http://www.phoenixceliac.com./index.html
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

celiacmaine-iac · Joined: 19 Dec 2007 Posts: 702 Location: Maine

Any disease that has 250 signs/symptoms + or - is bound to be misdiagnosed often.

Let me clarify why I so strongly urged you not to make huge dietary changes without keeping your doctor in the loop. Coumadin is a drug that has to be monitored very carefully. In the correct dose it will save your life. (It did mine.) However the foods we eat affect how the coumadin works. If you suddenly add too many high-vitamin K foods for example, you may end up with another clot which could kill you. Too little vitamin K in the diet with a certain dose of Coumadin could cause an internal (or external) bleed, which could also kill you. How each person reacts to coumadin and the effect that their diet has on keeping them therapeutic is different for everyone. That is why my doctors told me to keep my diet on an even keel while on Coumadin, and is why I suggested you talk to your doctor before making any big dietary changes. If nothing else they may want to monitor your clotting times a little more often to make sure you stay within the therapetic range. But I assume you are an adult since you mention being married, so you are certainly free to make your own decisions regarding your health.
_________________
Steph