Gluten Free For 2 Weeks And It's Going Well

[Katybug]

Hey Everyone,

I just wanted to let you know that I haven't posted a lot for a while because I have been prepping to move back to my house (which I've done now) because I needed to go Gluten Free. (Mom and stepdad have no intention of being gluten free and their house isn't large enough to have separate diets going on.) I don't test positive for any gluten allergies or Celiac but ALL of my docs agreed that it was worth a shot in figuring out the mystery underlying cause of my problems. And, they also agreed that anything that helps me reduce inflammation in my body is a good thing.

So, although it has been a challenge to get all the right groceries and do all the cooking, dishes, housework, etc., etc., etc., by myself again, I really feel it is worth it. I have not found that I feel at all deprived on the diet. I have found plenty of food in my grocery stores (I have done my best to avoid the GF junk food). And I found a great cookbook that has the kind of recipes that I would eat gluten free or not.

I feel much more energized, with much less fatigue, and my joint pain is slightly better. I did also go on a another trial of steroids a week ago, so that may be contributing, but I just wanted to let you all know that I feel the effort has been worth it. My neuro symptoms and my cardiac symptoms have not shown any change yet but it is early in the process so it may or may not happen. BUT....if the only thing that happens is that I have more energy than I had eating gluten, I will be happy.

I was dreading it because it is made to sound so hard. I haven't found that at all. So, if you're on the fence about trying it, I encourage you to give it a go (as a cheerleader...not a doctor giving advice).

Have a good one,

Katie

[Dizzysillyak]

Good to hear you're not having any problems with the change. We all seem to notice changes /

improvements at different rates. I stopped feelng jittery 24/7 within a few days but it took

me a year to get over my ataxia. This info is probably in theglutenfile.

Jsyk, many of us have other food intolerances, nutritional deficiencies, hormone irregularities, and gi dysfunction to deal with too. An integrative doctor can order specific tests for these or you can

try to wing it. Imho, I'd test if I could afford it but if not I'd try eliminating all common food

intolerances and eat a wide variety of healthy foods, inc sea veggies and kefir. The Wahls diet sums

this up.

fwiw, I wasted too much time, 7 years total, trying all these before using mast cell treatments. Granted I needed to know my intolerances, nutritional deficiencies, etc but those can be determined in months not years.

None of the tests I had run helped me with my CHRONIC oi (orthostatic intolerance), pain, swelling or energy tho. These mostly helped with digestive problems by identifying candida over growth and digestive enzyme deficiencies.

Finding h pylori and parasites via a stool test of course was an exception. These wiped me out until I treated them.

Avoidance of certain trigger foods helped with pain and swelling but not nearly as much as the mast cell treatment. My oi, etc is so much better now. We have info on mast cell treatments here.

Tc .. D

[futurehope]

Hi, all,

I may be interacting with you more in the future in regards to gluten free as my allergy doctor broadly hinted that gluten is one of those items that has the potential to create many difficulties, and that he thought I might benefit. I am not looking forward to it because I do not think it is easy. I also think it is more expensive and requires more meal prep which I do not like.

I'll know more what he says after my FU visit on Tuesday, but I fear I may be joining the GF folks.

I hope I can keep my weight on, on this diet. Right now I'm getting too thin.

[Katybug]

dizzy - I am (unfortunately) well aware of mast cell and other food sensitivities...I have both. I have done an emlimination diet to rule out foods that are a problem. Surprisingly, the usual suspects like dairy, corn, soy are not a problem for me. But, grapes, bananas, avocados...lthings you wouldn't expect have been a problem. I ahve a few others too. I am dx'ed with mast cell activation disorder as well as severe classic allergies and am on H1 and H2s. I also get allergy shots and my immunologist is trying to get me approved for Xolair shots because I am uber reactive to everything (I've even become allergic to my makeup that I've used for years. I get blisters around my eyes. Ugh!) Thanks for the advice though. I know you have been a big proponent of GF and I totally understand why now. I am having a bad POTS day today but I still feel less fatigued and more alert sitting here in bed typing this right now.

futurehope - I am sorry you are going through this too. But don't stress out about it. I will be happy to PM you with tips I've figured out so far and the name of the cookbook I got. There is more food prep because eating out or eating prepared foods is definitely more limited but the first thing I learned was...If I'm making a little, its the same cleanup as if I make a lot and freeze a bunch. So, my first week was a bit more difficult because I was working to get ahead of the curve, but, once I had some things made that I could pull out when I didn't feel well enough to cook, it settled down and has become easier. I decided not to make most baked goods from "scratch" and use the GF premade baking mixes. I'm not much of a baker and I have a small kitchen so storing multiple types of flours won't work for me. But, I found a cornbread mix that is just as easy and tasty to make as the regular cornbread mixes. I've found a chili mix that you only need to add ground beef/turkey and a can of tomatoes to and its some of the best chili I've ever had! I couldn't believe it. And, it made 4 portions, so I ate one that night, put one in the fridge for sometime within the week, and then froze 2 more portions. The products in the store are a bit more expensive but I think I will break even by the end of the month since I won't be eating out as often. Anyway, like I said, don't let this cause you stress...I am happy to be your cheerleader and moral support if it happens. It really isn't bad and it has really helped me eat healthier in general.

[comfortzone]

Glad GF is having your health head in a great direction - wellness! I have a general question though - maybe someone can answer. If you have the joint hypermobility, chronic fatigue and OI as well.... And your treatment is doing fairly well in leveling HR and BP issues.....

What's left is pain and fatigue. As I read about GF diets and MAST Cell stuff - I do know my doctor will order the rather expensive set of daily meds for Mast Cell protocols - I have to admit I am utterly clueless as to how to go about investigating all the allergy and immunology stuff.

Do I ask my primary for a referral to ? this is where I get confused - do I ask her for an immunology referral? Or a chronic fatigue syndrome 'type' doc referral, or do I ask her 'may I have a referral to an allergist?'

I don't have much of a history in the allergy dept... meaning no known food allergies or issues - I like food - and it likes me.... But I did have wicked bad hayfever as a teen that resolved on it's own - and I do get once a year out of control body rashes - I used to call it the winter itch - always came in winter and exploded after scratching maybe one small red patch on an arm or leg - head to toe rash ensued very very itchy - always steroid cream and a medrol dose pak would do the trick - sometimes repeated once. Maybe this is mast cell stuff I dunno.... I do get flushing - my arms get red with any exercise - and I have labile b/ps.

So with EDS it confounds the picture of true Gluten reaction joint pain - versus inflammation from arthritis from too much play or laxity of joints -- I have four replacements - am I allergic to the metal? at a low level? Why do I have such a body full of "itis's'.............Is it a wheat allergy - or is it just my bad 'genes' --- as my ortho said, "dear you were born with a bad set of tires"

Any advice on how to go about this - who to ask for what - can you let me know? I have a hb A1C of 6.0 to 6.1 all the time - so borderline diabetic - and a low thyroid level requiring supplementation - I wonder if that is d/t autoimmune stuff....

Thanks for any help on how to get the proper diagnostics for this fatigue syndrome - and the chronic pain - My celiac test from Mayo neuro general screening was negative. Usually have a positive ANA - yet no reason for it. No RA found on tests - just so frustrating to be fully debiltated - yet not know what path to take --- because I dunno what the underlying problem is.

Or do I keep the doctors out of it entirely - and just quit all 'carbs' so to speak that have gluten? What if I'm allergic to all the foods I eat and I just don't know it - I've taken Nexium for ten years d/t GERD - that can't be healthy either - but I must or I'll be so uncomfortable with gastric burning... maybe it's all just food allergy and I never knew?

[Dizzysillyak]

Katy,

Sorry to hear you have such extreme allergies. Hopefully eliminating gluten will calm down your immune

system.

On an extremely selfish note, my apologies, it makes me feel better than you took the mast cell protocal

route first and are now going gf. I was kicking myself for going the extreme, but healthy, diet route first.

Fwiw, I firmly believe we should not be eating human milk past a certain age, toddler ?, or any other animal's milk.

There are ingredients in these that our bodies or animal's bodies only need when growing at a rapid rate.

I'm anti soy, grains or processed foods. But I'm

just basing this on my experience, some reading and my desire to keep the foods going into my body

as pure and healthy as possible. It's my computer background. Garbage in = garbage out. Lol.

[Dizzysillyak]

Hi Nowwhat,

Fwiw, if you read the info on what conditions can be associated with gluten, theglutenfile, then I'd say

you need to be gf. However, no one I know at this time can predict if your body will respond. I've

met several people over the last 7 years who had ataxia, thought it was from gluten based on

having gluten antibodis, but didn't respond to the gf diet.

So, I was either lucky. Or eliminating most of the toxins

from my diet and adding brain foods at the same time helped. Or they were getting too much gluten from gluten cross contamination. The FDA has yet to establish any standards so we're at each

manufacturers mercy.

The gluten antibody stool tests are much more sensitive than serum. Even I'm negative on the serum tests and I just got my first low gluten antibody stool test

result this year. It's a funny story .. I was eating a few "gf" foods prior to each stool test to see if I was still reacting. Duh !

I'm also a DQ2 tho and I "think" I read that

we're more likely to respond. It's been years since I read about gluten ataxia. This should be in

theglutenfile tho.

In the world of restrictive diets, many of us discover that we feel better by eliminating

other common intolerances such as dairy, corn, soy and all chemicals. It's all related to having

what's known as leaky gut and the consequences. In a nutshell, our bodies will become over reactive

to the foods we're eating regularly, pathogens are allowed to run rampant, etc.

I have celiac disease so my gut becomes leaky anytime I get exposed to gluten. And it's freakin everywhere

nowadays. In fact I just saw a pkg of seasonings on a food tray at a hospital with wheat as the first ingedient. Huh ?

How insane is that ? And the lemon pkg said it contained soy. What's wrong with using real lemons ?

As far as getting tested for a mast cell disorder after reading how hard it is to get the right tests, I started

trying different meds. To my surprise, Wal-zyr helped my oi a little right away. I'm still playing with my regime

and will run this past my integrative doc soon. I'll leave it to my doc to determine if I need to see a

specialist. She's very good at understanding all this medical jargon so I trust her.

Hth .. D

[Katybug]

dizzy - Technically I agree agree with you about the diet stuff...but I wouldn't be happy without cheese! But, I do think all things in moderation is important too. We are omnivorous animals (I know we forget that we actually fall into that category) and we should remember that when formulating our diets.

nowwhat - I would ask for a referral to an allergist/immunologist (you can usually find someone who specializes in both.) But, it is important that that doctor is familiar with mast cell disease. Not every immunologist is familiar. Just so you know, the drug protocols for mast cell are not particularly expensive and depending on the combo your doctor suggests, might be over the counter. Some of your symptoms do sound like it could be mast cell but clearly you need a doc to really dx this. It is not uncommon for people with mast cell to issues to get rashes from cold or heat. Gluten is known to cause inflammation, even in those who are not allergic/intolerant to it. So, a GF diet could help alleviate pain/symptoms even in those not allergic to it. That's one of the reasons my docs have me trying it...at best we find out I am really allergic, at worst it might help alleviate some of my inflammation. The rheumy's at Hopkins and the GI that I just saw both agreed that small bowel biopsies (done through endoscopy) were the most accurate test for determining Celiac Disease. Although, the GI was very clear that the most recent science shows that there are people that are extremely gluten intolerant that do not have Celiac or test positive for the allergy but can become very sick from it. Also, in reference to your low thyroid, have they actually tested you for Hashimoto's Thyroiditis? That is an autoimmune disease and can cause some of the symtpoms you describe (Mom and sister have this and I might be on my way too).

[Katybug]

I meant to include this too:

http://en.wikipedia.org/wiki/Gluten_immunochemistry