When Will I Start To Feel Better?

[G-FreeGirl]

Hello!

First of all, I would like to say that I am SO thankful for this website and forum! It's nice to know that I'm not alone in this (I have felt SO alone).

After 15 years of doctors, tests, drugs, diets, herbs, acupuncture, Reiki, hypnosis, etc. etc., Brenda Watson from Renew Life referred me to enterolabs.com. I am thrilled to have a diagnosis of Gluten Intolerance. It showed that I have two genes for this, one from each side of the family. It makes sense. My dad is Italian so I grew up on Italian breads & pasta. My mother is Finnish, & Elisabeth Hasselbeck says in her book that gluten intolerance is so common in Finland that every McDonalds has gluten free buns. I was doomed!

I know I need to get over being PO'd at all the doctors that I have been to; SIX gastroenterologists told me I had IBS & to take Metamucil and/or anti-depressants. For two years I went to Chinatown, and they had me brew & drink the nastiest tea you ever smelled or tasted, twice a day! I had to hold my nose just to get it down. Why is it that our doctors are so uninformed about Celiac/Gluten Intolerance?? I even went to an Allergist who said that food allergies don't cause gastro problems.

For the past 4 months I thought I was gluten-free, but just found out my multi-vitamin contained gluten, along with vanilla & a couple other hidden sources. I mostly eat at home....chicken, salads with lemon juice & olive oil, veggies, rice cakes, eggs, gluten-free breads & tortillas, almonds & cashews, & granny smith apples. The past week I added blueberries & strawberries and my belly ballooned out like I was pregnant! It hasn't gone down yet. So my question is, how long will it take before I start to feel better? I'm not noticing any improvement yet.

In reading this forum I did see a few things that I had never considered...like new cutting boards. I thought just washing the current ones would be good enough. Tomorrow I will buy new cutting boards!

Thank you for listening to me and for all of your help!

[G-FreeGirl]

I forgot to mention in my first post that for the past 4 months I have been taking Renew Life's Intestinew (L-Glutamine to heal the intestines), digestive enzymes with every meal, major probiotics (Renew Life's 200 billion), omega 3-6-9 fish oils, & every vitamin imagineable.

The enterolab CDSA test also showed "bacterial dysbiosis," the bacteria in my gut is "out of whack." So, I have a double-whammy going on.

Thanks!

[rdunbar]

Don't feel alone, i've been through much of what you have and lately a lot of symptoms are coming back which really was me wondering and feelng helpless. I'm

gluten and casien free now for @ 5 months and was doing much better for a while, but achy hip coming back and bad mood swings, tingling in my right arm and shoulder, and worst of all the dermatitas herpetiformis blistering again and itching more , but I have to admit i'm not nearly as sick as I wAs when I was carelessly ccing myself and using dairy, so I should be happy, but it is just sooooo frustrating to just center your whole life around being supercarefull about everything surrounding eating and your problems come back, it's kind of scary. I feel so confident that being gluten free is the only answer for all the complaints I've had for so long, and after trying a ton of things in the past, like dermatologists, acupuncurists, naturalpath " healers" , and clueless doctors that have helped not at all, it just sucks so bad to even entertain the thought that maybe I'm on the wrong track again, even though like I said I feel like I am on the right track with the gluten free lifestyle, it's just hard to be patient when the adversity just never seems to go away. If the DH ever really goes away I will just jump for joy, because I have just resigned myself to enduring it forever so many times in the past. All the other symptoms suck, too, and the mood/ behavior problems are probably the most destructive, but I'm telling you DH is a nightmare

[Bennie]

Thanks for sharing. I feel for you both.

What is this enterolabs.com thing about? Is it gene testing?

I have heard that when someone is Celiac that they need to get all new cutting boards, cookie sheets, new toaster, etc...

Rdunbar, do you drink coffee? Could that be possibly adding to the DH?

[G-FreeGirl]

Thank you rdunbar & Bennie for replying.

enterolabs.com has a test for gluten sensitivity and you can pay a little extra to have the gene testing done. They do not test for Celiac...that has to be done by biopsy of the small intestine. The name of the enterolabs test is "Gluten Sensitivity Stool & Gene Panel Complete." Be prepared to pay around $360 and insurance does not cover it. To me it was well worth it because no one else was able to figure out what my problem was.

I'm sorry to hear your symptoms are coming back rdunbar. It is SO hard and SO frustrating like you said when we're careful yet we still don't feel any better. I have a feeling that you & I are both on the right track. For me it's probably just going to take time since I've been like this for 15 years. I feel like I've eliminated all gluten but I'm sure it's possible I've missed something somewhere. I did get all new cutting boards but haven't gotten a new toaster yet. Maybe that's my next step.

I'm sorry to hear about the DH. Thankfully I don't have that yet but it certainly sounds miserable. The mood/behavior problems are terrible...I can tell instantly when I've been "glutened," I turned into such an irritable monster. Sometimes I wonder how my husband puts up with me!

Both of you take care...

[Coolclimates]

It's shocking how ignorant GI can be about Celiac and gluten intolerance. I saw one about a month ago who told me that I only had a "mild" case of Celiac Disease and that I was being too parinoid about what I eat. She also said there my symptoms are probably not related to Celiac and will probably never go away (I have fatigue, restless legs, frequent nose bleeds, nasal and sinus pressure/allergy symptoms, acid reflux, frequent yeast infections, easy bruising, depression/anxiety/daze, acne, some rapid weight loss). Well, I have gained several pounds even though she told me that I wouldn't gain any weight with this diet. I also asked if it would be a good idea to eat more whole grains like quinoa, amaranth, etc as opposed to corn, potatoes and rice which have little nutrients but lots of calories. She said that I should not worry at all because all grains have the same amount of nutrients...WTF? And she's a doctor?

I talked to someone on the phone from the Celiac Center at the University of Chicago and told her my experience with the doctor. She said that doctor was wrong on so many things but unfortunately, she has heard complaints like this about many other GIs, too. She said that to tell me that I had "mild" Celiac disease was like telling someone that they are "mildly" pregnant! It may not be bad now ("mild"), but if I don't do this diet, it will get worse!

Unfortunately, I have not noticed much improvement yet but like I said I've gained some weight (I hope I don't continue to gain more) and am having less restless leg syndrome. Plus my parents say I'm looking better. But I'm still tired all the time. I just wonder if I could also be consuming some gluten by accident or if I should eliminate dairy products for awhile and see what happens. The lady in the Celiac Center said she did not advise me to cut out dairy since I never have had the stomach and digestive problems (with the exception of acid reflux) that some other Celiacs do. I'm just still wondering if I should cut out dairy for awhile. I will see my sleep doctor the day after tomorrow and ask her (she was the only doctor, after about 12 plus years of symptoms, finally had me get tested for this).

[Bennie]

Hi Coolclimates,

If you are willing to try then I highly recommend cutting out both dairy and corn... those two are not good for me, in addition to gluten. But unfortunately most commercial gluten free baking uses corn.

Giving up dairy could make a big difference. I can tell when I have accidentally eaten something that had dairy in it because I need to blow my nose often. I have heard that consumption of dairy increases mucus- so wouldn't that therefore effect your sinuses?

Someone I know has a bad intolerance to dairy, but it only started out as acne, this person had no digestive problems and then what seemed like over night he was running to the restroom if he had even the smallest amount of dairy. Sure enough then when he gave up the dairy the acne went away, but until it was bad he had no other symptoms.

Almond milk is a healthier choice than soy milk for everyday use.

[G-FreeGirl]

Wow...if we have to also cut out corn & dairy...doesn't seem like there's much left to eat! But since we're not getting any better, it sounds like that's what we need do. I'm going to give it a try for a while to see what happens.

Last week I tried adding blueberries back into my diet and they gave me all kinds of problems. Yesterday I tried watermelon and the same thing. It looks like fruit is going to be a problem for me too.

Frustrating but I know things could always be worse!

[Bennie]

Well, if you are just looking at what is commonly eaten in a North American diet then yes it wouldn't leave much. But for example places in Asia eat little dairy, corn or gluten. It is more work to have this diet and it does involve looking beyond just the foods that we have grown up eating. There is a whole other world of fabulous food out there that we have never tried or even heard of.

You can Google 'vegan gluten free' and I promise that you will find some great meal ideas... and you can add fish or meat to this dish if you want.

I bake my own treats and breads... I love that I can make it as healthy as I want and that I know exactly what ingredients have gone into it.

But I am wondering... what if it is something like tap water or something that isn't a food that is bothering you? I really hope that you can get to the bottom of this. Let me know if the corn and dairy omission makes any difference to you.