• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
greenbeanbaby

Overwhelmed And Don't Know Where To Start...

Rate this topic

Recommended Posts

Hi everyone... So I am new to the board and am completely lost on where to begin so please forgive me if i am on the wrong forum...

 

A bit about me and the situation...

I am 31 years old, married, and have 2 kids... for YEARS I have been allergic and intolerant to many foods... I remember being 5 and complaining to my mom how apples and bananas made my mouth hurt and feel funny...  I have been lactose intolerant since 8th grade but still drank milk, ate ice cream, and ate my fair share of cheese on occasion [i live in wisconsin]... Even up until a month ago, I would drink a 2% latte from starbucks... PLUS i am ALLERGIC to soy milk... I ate my ice cream and drank my lattes knowing my stomach would be messed up afterwards but figured it was worth it... not so much anymore :(

 

I am allergic to MOST RAW FRUITS, VEGETABLES, AND NUTS... bananas, avocado, watermelon, apples, pineapple, almonds, raw broccoli and carrots... I get cold sores in my mouth, itchy ears and throat, and in my recent years ASTHMA... i try not to take my asthma spray or ANY meds... About 2 or 3 years ago, I was tested... about 50 tests on my back and every one flared instantly... they said most was a cross-reaction to outside allergies... yes, i have allergies to my cats and dog...

 

I am a vegetarian but eat fish... I HATE fried foods of any sort... haven't eaten fried stuff for YEARS... we rarely go out to eat as i'm pretty particular with who handles my food and where... i have certain dislikes for things because of texture too... like rice noodles...

 

in the past couple of months, I have really went healthy and tried to steer clear of bread, pasta, rice, etc... i stopped the coffee and went to GANO coffee instead... I am allergic to green tea- or at least it makes me utterly queasy... i figured even though i was allergic to soy i could eat boca burgers baked or something but i stopped those too...

 

So in the process, I started to eat a bit of bread or pasta and started getting bloated SOOOO bad, to the point that i am in pain ALWAYS and look 3 months pregnant... I would get bloated like this over the years and always assumed it had to do with intaking lactose...  but it wasn't often... NOW IT IS... then i thought it was a reaction to apple cidar vinegar so i cut that out but then when i'd eat any pasta or a slice of bread or normal crackers, i'd be bloated with a massive headache... I have tried to go GLUTEN-FREE as i have been SUPER TIRED, lethargic, cranky, moody, and overall frustrated... 

 

in the process, i discovered that OATS and QUINOA give me HIVES...  So cooked oats is a no-no and so is quinoa... using these flours or in gluten-free meals is out of the question... Also, COCOA and dark chocolate makes my mouth itch badddd...  

 

So I am frustrated... i have no insurance... finding gluten free foods that do not contain things i am allergic to is NEAR IMPOSSIBLE :( I just wanna cry... since I am allergic to coconut and almonds, i cannot cook with that either, right????

 

Today i made muffins... it had sorghum flour and chickpea flour and tapioca starch... i also used a bit of milk and parmesan cheese since i figured cooked might be okay... I AM SOOOO BLOATED :( I don't know what to do... I can't tell if it was the tapioca or the milk as even when i eat gluten-free foods from a HEALTHY resterant, i am SO BLOATED... so after today, i think maybe it's some type of flour giving me this reaction... 

 

now, I have been eating mostly chick peas roasted/baked and COOKED veggies...  I am frustrated and uncomfortable and disheartened... Can anyone relate to being allergic to so much stuff?? and could i be allergic to gluten free flours? i plan on taking a test for a gluten allergy and will pay out of pocket... they said i do NOT need to be eating gluten for it to show up... I saw on the site it says its to be checked for gluten intolerance but when i called it says its for gluten allergies which i thought were two different things...  

 

We recently moved into a single family home... prior to that, the lower tenants smoked a ton which gave me constant migraines and sinus infections... i never took anything for them as i loathe medicine... i have been eating VERY healthy for over a year with no extra energy or even weight loss!!! When we moved here in January, I lost 5-7 pounds.... i know the allergy infested environment contributed to my weight gain and am happy we moved... 

 

i know i have an array of questions and sound totally like a complainer here but I have been looking online for weeks and i feel like NOT EATING ANYTHING... so far EVERYTHING is making my body react... i STILL have constant heartburn and on top of that, i am taking probiotics so i thought that would help... I came here to maybe see if anyone had suggestions, could relate, or understand... I dont want to suffer but i feel like i am getting reactions to everything :'( 

 

thank you! I will keep looking in the site but am so overwhelmed so i hope this was an ok spot to post my brief and weary introduction

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Greetings Green Bean Baby,

 

Your positive response to the diet may indicate a gluten problem.  I think other intolerances or allergies can develope with that. I feel for you in all that struggle.  I have alot of intolerances, but have found great tasting substitutes.  I think you will be able to find subs too.  It could take some time to figure things out.

 

I can relate to problems with cigarette smoke.  I am glad you now have your own home away from that. 

 

I had 30 years of bloating, fatigue, and brain fog.  I have been grain free 10 months and my mind cleared.  I have done much more besides going gluten free.  The situation can be pretty complicated, but you can make progress.  I have removed sweets, gluten, grain.  I added supplements as determined by my chiropractor.  I did food intolerance tests and came out of that with a rotational diet.  Most things I only eat as often as every four days.  I know you could be overwhelmed, I don't intend for you to do all these things, but only that they are out there if you need them.  Don't give up until you try all of these and probably more!

 

Get Well***

 

Diana

Share this post


Link to post
Share on other sites

Greetings Green Bean Baby,

 

Your positive response to the diet may indicate a gluten problem.  I think other intolerances or allergies can develope with that. I feel for you in all that struggle.  I have alot of intolerances, but have found great tasting substitutes.  I think you will be able to find subs too.  It could take some time to figure things out.

 

I can relate to problems with cigarette smoke.  I am glad you now have your own home away from that. 

 

I had 30 years of bloating, fatigue, and brain fog.  I have been grain free 10 months and my mind cleared.  I have done much more besides going gluten free.  The situation can be pretty complicated, but you can make progress.  I have removed sweets, gluten, grain.  I added supplements as determined by my chiropractor.  I did food intolerance tests and came out of that with a rotational diet.  Most things I only eat as often as every four days.  I know you could be overwhelmed, I don't intend for you to do all these things, but only that they are out there if you need them.  Don't give up until you try all of these and probably more!

 

Get Well***

 

Diana

Wow, a rotation diet? That makes sense actually... i really am a tad discouraged and feel like the more i try, the more allergies/intolerances show up! For many years, it was okay but now as I try to be even more healthier it has worsened... What sort of supplements do you use? and you removed grain- does that include sorghum? With sweets, you don't do ANY? like not even stevia? or maybe vanilla extract? I love baking so i was hoping that i could find something that would work for me... but maybe it's too soon and that is part of the issue? i made a few peanut butter cups and even though they had cocoa powder, it was a nice break from chick peas and gluten-free crackers... no reactions either...  so how long did it take for your body to "heal" or at least feel PROGRESS???

 

Thank you so much for your encouragement andddd understanding!!

Share this post


Link to post
Share on other sites

I have OAS and a lot of food intolerances but not as much as you.  Used to love to bake but for the most part just gave that up.  Eat a pretty limited diet now but at least it doesnt make me ill.  Don't eat too many sweets.  But I am a diabetic so I shouldn't.

Share this post


Link to post
Share on other sites

At one point in my journey I felt like there was NOTHING I could eat with out a reaction. I did a STRICT elimination diet and have worked very hard to add foods back to my diet . I recently ( after a very very long hard battle )permanently  lost dairy  :(  It has been a very long hard road but well worth the effort.

 

I was vegan / vegetarian most of my adult life. I have fought long and hard to try to get back to  at least vegetarian  ,, for me ,, that is not able to happen  nor  does it appear it will be able to happen in the future . All of this saddens me but it is what it is .

 

I eat paleo now ( with the addition of limited  legumes) ,, not as bad as I though it would be, meat was something that I though my body did not tolerate well but once my other intolerances were cleared from my body I  have a few meats are now  my mainstay ., My body is healthy , my mind is clear of the fog , and over all  I am in much better control of my emotions  ( most days any way  :P )

Share this post


Link to post
Share on other sites
Ads by Google:


When I saw asthma, I thought you may also have an issue with sulfites (which is a type of preservative / food additive). Also, if your digestion is having issues due to ncgi or celiac, etc. then sometimes raw fruits and veggies can cause problems. They're a bit harder to digest. Same goes for chickpeas, they're higher in fiber than other beans.

 

Also, if you're eating canned chickpeas, they most likely have added sulfites. I cook beans on a pretty regular basis, after soaking for several hours. I usually use a pressure cooker, and today I'm going to make some in my new crock pot. The kinds of beans I eat most are great northern and navy beans. I've recently added black beans, too. I'm going to re-test pinto beans again soon. I also avoid all soy.

 

Here's a link that's a good starting place for sulfite information: http://www.readingtarget.com/nosulfites/

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,915
    • Total Posts
      943,492
  • Member Statistics

    • Total Members
      67,090
    • Most Online
      3,093

    Newest Member
    Angie663
    Joined
  • Popular Now

  • Topics

  • Posts

    • Apologies for my over-reaction.  As the shampoo exposure was only for a couple week or so, I doubt any lab tests would have indicated exposure. Unfortunately, since I didn't have the antibodies, I can only rely on my symptoms to tell me if I've been exposed. I'm fortunate enough that eliminating gluten (and dairy) from my diet completely fixed my problems. I have had no lingering systems, and now that I have been gluten free for a while, when I do get gluten I have a very clear reaction (and a distinct reaction to dairy) that follows a fairly predictable timeline. This has accidentally been tested a couple of times. For example, early on before I was better at reading labels I grabbed some cookies at the grocery store that I thought were gluten free (the company produces both a normal and gluten-free version, and this was before I learned to avoid shared facilities). I had grabbed the wrong bag but I didn't figure it out until about a week of feeling crappy had passed and I went searching for a culprit. Things like this have happened a couple of times, where I accidentally did a blinded experiment on myself. The symptoms are consistent, and resolve once I remove the offending item. So when I recognized my symptoms as the result of gluten, I went looking for a culprit and I found the shampoo and conditioner. I removed them and then I got better.  My problems are largely systemic. I wouldn't be surprised if I don't actually have celiac but some other immune mediated reaction that hasn't been defined, but calling it celiac is the best way to get people to take my needs seriously (which I'm sure you understand). Unfortunately, my problems don't seem to fit into any particular diagnostic bucket, so I've learned not to rely on the official medical terms and just go with what works. I'm lucky to have had doctors who think the same way, else they might have told me that I didn't need to go gluten free once I failed to show clear-cut celiac. Maybe I'm pre-celiac, maybe it's the much maligned NCGS, or it's all related to leaky gut (I am eagerly awaiting the FDA approval of larazotide so that I can get a doctor to give me some, I think it might do me a lot of good). All I know is that when I went gluten and dairy free it literally changed my life.  In general it seems that gluten exposure causes a generalized inflammatory response. I get some inflammation in my gut that manifests as reflux, acid indigestion (what I call "fake hunger"), and a little bit of urgency and unpredictability with regards to bathroom needs, but if that were the only problem, I think I could live with it. I also get headaches, brain fog, my depression/anxiety gets triggered to a scary degree, arthritis, muscle aches, and then, the clincher, muscles spasms in my upper back and neck that have been known to lay me out for a couple of days while I wait for the muscle relaxants to help me heal. The muscle spasms, arthritis and brain fog are the most recognizable and are usually what cue me in that I got glutened, especially the spasms.  Again, sorry for being oversensitive. I should have known better, since this is such a supportive community.  
    • I appreciate your point. However, constancy of my celiac symptoms indicates that I have had the disease for at least three years - while I have never experienced any food allergies in that time. Although I will keep an eye on any emerging allergies, I believe my current fatigue is due to nutritional deficiency, because the only exogenous change in my life style has been the transition to gluten free diet.   Yes, I certainly need to keep a food diary. Thanks again for the advice.
    • In many cases no.....I consume heavy magnesium foods like pumpkin seeds, cocoa nibs etc....and still need 2-3x the dose of magnesium recommendations. Going on more of what poster boy said. You dose magnesium to tolerance with citrate like Natural Vitality Calm you start off small partial doses and slow ramp up....it can hit you hard causing gas and D if you go to quick into it. You dose citrate to tolerance meaning you slowly up your dose til you get loose stools...then back down a bit. You should have vivid dreams with a good dosing....also if it becomes to harsh or you can not handle citrate there is Doctors Best Glycinate...it does not have the gut effects at all...but the dreams and how much it makes you relax is more more felt.   ...with this disease you can have a food intolerance or allergy crop up out of the blue....like no where. You have a autoimmune disease....celiac it effects your immune system and can make it really wonky. Like it seems to always be on guard like a sleep deprived sentry on stim packs...jumps at everything and shoots it. If you get sick, eat something odd or harsh you system might red flag it as a issue for awhile and go bonkers....keep a food diary and try a food rotation in the mean time...OH as a example to this, I was fine with chia seeds last week...I got a cold over the weekend....same bag, same brand same way....withing 30mins I now puke if I eat them...new intolerance.....I also am finding jalapenos/paprika making it sleepy tired....so I am removing them both for a few months from my diet and changing to other sources for fats/fiber and vitamin A/C til I get over that issue.....these things just happen. https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
    • Hi Isabel, Your body needs nutrients to grow.  Nutrients not absorbed well when we have celiac disease damage in our guts.   But, if you do a good job of avoiding gluten, the gut damage should heal and you will be able to absorb nutrients again. The thing to remember is celiac disease is an immune system reaction.  Immune reactions are very sensitive and just a tiny amount of gluten can get them going.   And they can last for months.  So it;s very important to avoid all gluten all the time, to keep the immune reaction down.  Keeping the immune reaction down keeps the damage down, and the healing can keep up. You may start to grow more if you can absorb nutrients better.  Some extra vitamin pills might be a good idea.  Your doctor should know.  
    • Thank you Gail for your response. Of course one should be mindful of the possibility of food allergies but I don't think that's the case with my current situations. Save for gluten containing product, everything I eat now I used to eat before with no reaction whatsoever. I think my issue is more likely to be deficiency in minerals and such.
  • Upcoming Events