What A Journey

[PNW Rick]

Hi Fellow gluten avoiders. I'm new to the forum.

Been a long misguided journey. Have not felt right for a couple years. Finally got out of the big box DR's and found a great Naturopath in Seattle. So angry with the general medical community. First sign was fatugue and iron anemia. Had an endoscopy and colonoscopy for that 9 months ago and it came up with celiac sprue. Nobody there said anything to me about gluten avoidance or mentioned it on the endoscopy or colonoscopy report or anything relating to wheat, rye, etc... intolerance. So i'd been eating away with whole wheat bread and all the other crap we should not be eating since then.

Have not been sleeping well for months. maybe 3-4 hours a night if I'm lucky. Have been complaining to the docs about stomach issues, fatigue, no sleep, no energy, face and extremity numbness, mood swings, gas, bloating, irregular bowel, constipation, night sweats, irritability, my eyesight has taken a quick down turn too, dizzyness, muscle aches, etc.... so in their infinte wisdom they put me on Zoloft, cause it's all in my head apparently. That put me in the ER twice in 3 days and was bedridden for over a week, never in my life have I felt that sick. I had 50% of the listed side effects for that Zoloft garbage. Felt like I had drank the colonoscopy juice they give you for 5 days straight. I'm down to 139 lbs, I'm 6ft tall and usually hover around 180-190.

Missed tons of work, luckily the place I work has been very accomodating for this, but I'm on FMLA and don't get paid for missed work anymore, sick and vacation have been negative for months now.

Finally called my friend who is just finishing up here doctorate at bastyr here in seattle, a naturopatic college. She worked some magic and got me into the doc she is interning for. what a blessing. After my blood work from my new doc I came back with celiac(which I already knew but did not pursue due to the report not saying anything about avoiding gluten) CFS, Bronchitis, strep, and a stomach fungus. So we are tackling those issues first and will work on nutrition and whatever else is wrong with me after those are cleared up. Gave another round of blood and will be getting the results of those tests next week.

So mad at the big box hospitals and doctors right now I see red when I think about it.

I have decided to take control of my body and not listen to anybody but my new Doc.

Bought an alternative medicine book at amazon, along with some others on celiac, some aromatherapy items and sound therapy items for sleep. Hope it'll help to relax and aid in my sleep problem. As of right now I take a muscle relaxer and 50mg of benadryl and I smoke an herb to help me sleep to. I can get around 5-6 hours a night that way. I used to be able to sack out for 10-12 hours on the weekends no problem. Been years since I've slept like that.

The sad thing is I thought it was all age related cause it snuck up on me over time and was beginning to think it could all be in my head. I'm 47yo and single and my eating habits were horrible befor this. Finally had enough and went to a Naturopath, best thing I ever did.

Thank goodness for my family and my two awesome FurKids, would not have been able to get thought all of the above and whats to come without them.

Been totally gluten free for about 4 days now, going to be a long road to recovery, but one I will not stray from.

Sorry if this is somewhat unreadable, first time I've put all this down on paper, so to say.

[bartfull]

Welcome! It is amazing how many similar horror stories I have heard. They give you a diagnosis and then don't tell you what it means! I don't have much faith at all in today's medical profession.

I'm glad you finally figured it out though. There is a wealth of good, solid information here to help you as you struggle to learn what you can and can't eat. Look around the site and read. There is info on reading labels, great recipes, all kinds of info on secondary intolerances, and plenty of support and hugs for those days when it really gets you down.

So stick around, and ask lots of questions. People like Mushroom and Skylark, and LOTS of others have MUCH better info than any doctor I ever talked to. Pull up a chair and consider yourself at "home".

[amcam17]

Hi PNW Rick!

I totally get where you are coming from. I had various symptoms for years and the doctor's said I was just growing up. I'm only 21 and can't relate to everything you said but I can some. I was misdiagnosed for over 2 years by my family doctor until they ran blood work. That came out with outrageous numbers. I then went to the specialist about a month ago and just had an endo done last Tuesday. Needless to say it is Celiac. Trust me the first few days are not easy. I've been gluten free since Wednesday. I was doing awesome until yesterday when I went out to eat and everyone else ordered all that yummy food and I was stuck with a teeny tiny chicken breast and broccolli. It really stunk and really hit me hard. Anyway, I'm doing a little better today and trying to find delicious receipes for new foods

For the sleeplessness, I went through that probably a little over a year and a half ago. I blammed mine on stress and always thinking about what all I had to do the next day. I went to a doctor who told me about melatonin which is a natural sleep aid. So I take one 3mg pill every night with 2 tylenol for my muscle cramps. I sleep like a rock. Maybe you should give it a try. It's really worked for me and I understand with missing work like you have. I have many other health issues besides Celiac and just returned to work a few weeks ago.

I promise you though, stuff will get better and things will be easier.

Please keep in touch. We are all here to help each other!

In Christ's Love,

Amie Campbell

[lucky28]

Welcome! Congrats on taking control and going gluten-free! Your story is similar to so many here. I can relate to dr's throwing antidepressants at the problem! I can't count how many times my dr(s) have written me a prescription for them, paxil, zoloft, and I don't know what else; I stopped filling them! Also something I've noticed is that I no longer wake up in a panic every morning! I would start the day full speed ahead then be exhausted by 10am! Now I have no problems hitting the snooze and being able to get a few more minutes sleep-it's like my overall anxiety level has dropped. It's a great feeling!

Hang in there, watch out for hidden gluten and browse these boards for some good advice! Chances are if you have a question it has already been asked and answered on here somewhere!

[bartfull]

I suffered from insomnia all my life. But after a few months gluten-free, I started sleeping like a baby. I close my eyes and am asleep within minutes, and I wake up exactly 7 1/4 hours later, feeling wide awake and ready to take on the world. Sometimes I think THAT is the very best part of going gluten-free. (Well, that and the rash going away and the lack of pain and the clear-headedness and the energy and...)

[love2travel]

You are now part of our family, like it or not. I, too, have read so many horror stories on here (including yours) and am saddened by what you have had to go through. These are LIVES we are dealing with! I am so privileged that my doctor is one of the few good ones. I think I'll keep 'im!

Welcome here.

[PNW Rick]

love2travel,

Gladly part of this wonderful family! I'm keeping my Doc too, but I don't know if he does normal practice stuff, I think he's a specialist. Regardless, I'm done going where I used to. I'll get a recommendation from my new one for a good family practice doc if needed. I almost cried out of happiness when I got all the confirmations of all the stuff that was wrong with me. Been going on so long I was almost beginning to think it could be all in my head.

Hey Bart,

I've been reading some of other horror stories. I simply cannot fathom how they want some people to eat gluten knowing it will make them sick just to justify what we already know by source elimination. Stuff like that flat infuriates me. How bout this doc, what do you eat that bothers you the most? How about you eat that at every meal for 6 weeks and get back to me about your brilliant medievel testing routine.

lucky,

My old doc wanted me to go back on zoloft even after it put me in the ER twice in 3 days and put me in bed for over a week, I'm thinking to myself they must be giving away doctorates in cereal boxes these days. Right then and there was when I made the decision to find a Naturopathic Doctor.

Amie,

you're a trooper, I don't know how I would have handled all this at a younger age, I do know it would not have been positive. I cannot wait to get a good nights sleep. I love sleeping and I have always been a sound, long sleeper until the last couple years. I have read up on Tryptophan and Melatonin and some others, haven't bought any yet, but it's getting time to take the plunge. Also have some sleepy time tea but haven't tried it yet. Should get off my patoot and try one or the other and see what happens. I'm so darned gunshy to try anything new for fear of a negative reaction I tend to stick with what works, even if it's 5-6 hours on the best nights. If I can get 7, which I have once so far, I feel like I slept all weekend after only getting 3-4 for so long. I too would wake up and my mind was racing, I would wake up around 2-3am and that was it, no chance of going back to sleep. Stress was a huge part of that and was at it's worst when I and my old docs had no idea what was going on. Recently I started doing breathing and relaxation exercises in bed and that has helped. Read up on aroma therapy and nature sounds and so forth, have that gear on it's way too. I would truly be in heaven if I could get into rem sleep and log 8 full hours of good sleep again. I think this is the hardest thing for me right now.

Thank you for all the warm wishes, welcomes, advice and positive attitudes. Exactly what I need. This is a fantastic place.

Off to read the forums...Thinking I have more food issues other than gluten.

[GladGirl]

So glad you found out at an earlier age...I say that because I "just" found out, and I am now 59 going on ancient!! LOL! Seriously, I am finding the same thing to be true about the "Big Box" Dr's as you say. I am in the medical field somewhat as a Patient Care Tech. (Phlebotomy, EKG, and certified nurse asst) So, not all in the field are dumb, I can tell you that much!

That said, I too am changing my internal med Dr. for myself and my hubby who is diabetic. Oh yeah....lots of fun being on two diets, gluten-free and sf!! The more I look into their medical capabilities into handling Celiac, the more I realize, they don't see the real need, since our diet controls most of the problems. After having my liver enzymes elevated for almost a decade and climbing...not to mention how many times the Dr's would ask about "my drinking"...and making me feel demoralized in their own attitude, not listening to "me"...I like you went on a search. Mine led me to a hematologist who after my diagnosis, said, "Well, I won't need to see you again." ????? My Internal medicine Dr. never even acknowledged the diagnosis until I brought it up and he certainly did not suggest the gluten-free diet. (I only knew about it because of my Uncle and cousins who are also Celiac) Anyway, I kept my last appt after being gluten-free for 3 months because I wanted to see the new blood test results of my liver enzymes. They are almost back to normal!! This Dr. seems to think that because he prescribed a statin to me,ummmmm...and thinks I am taking it, that it "fixed" the liver enzymes...duh!!! Everyone who knows anything about meds, knows that a statin can raise them not lower them...and when I said as much he yelled at me; saying " All I want to do is help you, but you are not letting me!!!" REally??? Get over yourself Dr!

Anyway, onward to find a Dr, I went through my insurance company who just sent me a list of two for my area. I have to call them and see if this is really what I want, otherwise may be a DO, homeopath Dr.

In the meantime, I feel so much better, but still learning. This forum has helped so much! My sleep is not so back except when I have night sweats from time to time. Thinking maybe my thyroid is going off a bit, will have to have that checked soon. But wow, the difference in my muscles, and I can ride my bike without much pain, use my right arm to clean again...lol...maybe that isn't so much fun.

I have contacted a local support group here in Fl, and they pretty much told me the same thing about their experiences with Dr's. Obviously we have a huge need out there for some more education!!!!

Wishing you the best on this journey we have all ventured into.

[GFinDC]

Welcome Rick and puppies! You are in the right place, this is the best source of

info on celiac disease and gluten-free eating around.

I was going to suggest you get your thyroid checked also as thyroid problems are common with celiac. There is something called Hashimoto's thyroiditis that we sometimes get. Hashi's is an autoimmune condition that attacks the thyroid and can cause both hyper thyroid and hypo thyroid symptoms at different times. Eventually th ehtyoir dis destroyed and the person becomes hypo all the time. Anyway, that could explain your sleep problems and losing weight.

It could be your sleep and weight loss are just normal symptoms of celiac and malabsorbtion though. If that is the case you should improve after being on the gluten-free diet awhile. Sleep problems are very common with celiac, even more than thyroid problems.

If you like cooking you have the right disease for it. It is much safer for us to cook our own meals than trust someone else to make our food. Cooking from scratch using whole ingredients is a great way to go.

Some tips for starting the gluten-free diet:

Not eating in restaraunts

Eating only whole foods not processed foods.

Eating only food you cook yourself, think simple foods, not gourmet meals.

Taking proboitics.

Taking digestive enzymes.

Avoiding dairy.

Avoiding sugars and starchy foods.

Avoiding alcohol.

Some threads with good info:

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Celiac Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

Easy yummy bread in minutes

[PNW Rick]

Don't know what I ate yesterday, but I'm home today with with my furkids with a tore up GI sytem. My pooches think it's great when I'm home sick. Thinking it may have been either the miracle whip or cheese I had. Might as well go dairy free at this point until I can ask my doc about doing a full food allergy panel on me.

Loved bread before this, and most of my diet is meat and potato's and rice so this shouldn't be too much of a struggle, but I'm lazy and need to get in a routine of cooking for myself every night and not relying on the microwave. Time channel "Tim the Toolman Taylor" and get a nice BBQ set up and get creative with it. Veggies will be a struggle for me, for whatever reason, taste buds, I don't know, but they make me gag and I just can't get em down. Going to have to rely on veg sups for now until I can try some creative recipes to get the good leafy greens in me. I do like fruits so I am going to get on that bandwagon too. Was a huge processed food, fast food, convenience food junky until last week.

Thanks for the links, will check them all out asap.

I've pretty much ruled out restaurants until I get well educated on celiac and the restaurants that advertise gluten free meals. Outback steakhouse is one of them that mentions gluten free meals. Have yet to check it out.

Quit drinking months ago when my stomach really started bothering me, don't miss it at all, I have drank enough for two lifetimes so far, don't see the need to do any more damage to my body from alcohol.

Here's what I'm taking daily:

An anti fungal every other day

An anti viral 3x daily

On a 15b refrigerated probiotic taken at night

Alive Max Potency Multi Vitamins, 3 or 4 a day

Twin Labs B stress complex, 2 or 3 a day

Carlson Vitamin D, 8-12K IU a day

Nature Made Vit E, 1K IU

For sleep

I take a muscle relaxer, benadryl and smoke a little herb before bed, this gets me ~5 hours on average, give or take an hour.

I am going to buy some melatonin and maybe some tryptophan and try one of those to see if they help.

Have some sleepytime xtra tea with valerian and peppermint in it, will try that soon too.

I've read some stuff about magnesium helping sleep.

Also read 100K IU daily of Beta Carotene is beneficial.

CoQ-10 is another one I'm reading up on.

What really bothers me is my eyesight taking a quick downturn. Never had to use reading glasses until about a year ago. Used to have 20/05 vision, time to get tested and see how bad it's degraded.

I am an information freak when I comes to stuff like this, anybody have recommendations on nutrition books or digestive system books? Might as well get a Medical library going. Looks like I'll need it the rest of my life.

[ciamarie]

I hope you don't mind me butting in with this, but I would strongly suggest going slow on the supplements / vitamins until you've been on the gluten-free diet at least 3 months or so. When I realized that my skin issue (DH) was gluten-related and started eating gluten-free, I was in a hurry to 'get healthy' and bought some vitamins that didn't agree with me. So then I tried another brand. It's not at all in my budget to keep trying to find something that agrees with me, so I'm currently not taking any supplements -- not even probiotics. Though at this point, dairy seems to be o.k. in moderate amounts, so I have been eating some plain yogurt with fruit every few days.

As your system heals, you'll start absorbing nutrients from your food, also. Adding a bunch of supplements may only complicate things if you end up (as I have), trying to figure out other things you may be sensitive to. Plus it's expensive to have to throw them away well before the bottle is empty if you discover you can't take them.

[GFinDC]

Sounds like you will do fine with the diet Rick. I wasn't much on cooking every night myself. I used to make big batches of rice and veggies and meat on the weekends and freeze some of it. Make a different version every weekend and after a while you have a nice selection to choose from. A quick turn in the microwave and it is ready.

You can also try quinoa, it is something like rice. Make sure you rinse it good before cooking, same as with rice. Quinoa has more nutrients than rice and more flavor. So it's a nice alternative sometimes.

Another thing I like to make is gaucamole. It goes good with sweet potato chips or wraps. Mash an avocado with some lemon juice and garlic powder and salt/pepper. Add some canned salmon if you like. Drain it first. Salmon adds a lot of protein and flavor to the guacamole.

If you are grilling on an old grill it is good to clean it well first. Or you can lay down some aluminum foil first to prevent old gluten from contaminating the food.

If you do a search on snack ideas there are several threads about snacks that might be helpful.