Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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

greenbeanbaby

Recommended Posts

greenbeanbaby Newbie
greenbeanbaby
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


1desperateladysaved Proficient
1desperateladysaved
Posted

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

greenbeanbaby Newbie
greenbeanbaby
Posted
  • Author

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!!

Juliebove Rising Star
Juliebove
Posted

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.

cahill Collaborator
cahill
Posted

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 )

ciamarie Rookie
ciamarie
Posted

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: Open Original Shared Link

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Rogol72
      - Rogol72 replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough...
    2. ShariW
      - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

      In addition to gastrointestinal symptoms like diarrhea, I had gastroesophageal reflux that was becoming intolerable despite treatment with PPIs and antacids. When I went gluten-free, the GERD lessened tremendously (as did the other symptoms).
    3. klmgarland
      - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

      Thank you so very much Scott. Just having someone understand my situation is so very helpful. If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    4. Scott Adams
      - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to ...
    5. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748
    ebrown
    Newest Member
    ebrown
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Rogol72
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      My only proof

      By Scott Adams · Posted

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.