Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Variable Overwhelm Encouragment Wanted :)
0

7 posts in this topic

Hi I'm Christy, long time lurker, first time poster.

 

I've been gluten-free since Aug 2012, self-diagnosed NCGI, sorta doing OK, I also have Fructose Malabsorption and don't do well with dairy, likely casein moreso than lactose.  So I'm currently gluten-free DF and have to weigh the limited foods I can eat to stay under my daily 3g free fructose limit, as well as the fructans, polyols and other FODMAPs that disagree with me.  I figured out the FructMal in April 2010 so I was mostly wheat-free since then.  FructMal is cummulative rather than all or nothing, so it took a long time for me to overcome the gluten denial, thou I had good improvement just from the FructMal adjustments.  There was so much detail I had no idea of, so I'm beating myself up for not knowing what I didn't know - silliness!

 

I'm just tired, not so much physically but emotionally.  If I look back at how awful I used to feel all the time and compare that to feeling awful now maybe once every week or two, I've made huge improvement.  But it's mentally exhausting.

 

There was gluten in stuff I missed for the longest time, like the Bonnie Bell lip blam I used DAILY.  At that realization, I got focused on double checking everything again.  My frozen green beans said "may contain wheat" so out they went.  Uncertain origin of vitamin E in lotion? Bye bye

 

Almost all my kitchen stuff I've replaced, or I make a best effort to make it safer. like my marble mortar & pestle is possibly glutened, so I use the pestle only to crush things in plastic baggies.  I haven't replaced my VitaMix container purely out of cost (they're $130), I scrubbed it & soaked in vinegar and since we use it at least 2x a day, I'm hoping that the fact that it's been washed 600 times since last possible minor gluten (cc oats) is enough.

 

Luckily, I gave my husband Wheat Belly to read and he decided on his own to go gluten free also shortly after I did, so that makes it much simpler.  My darling kitteh was already gluten free :meow: [said cute kitteh pictured in avatar]

 

So there are things I still need to do, like scrub down my cabinets and replace the shelf liner, I'm getting to them a shelf at a time, I greatly dislike the cheap plastic cutting board I now use, I need a bigger sifter, etc.  Most of the stuff left to do is just a time and money situation, so I'm making progress and yet it's frustrating.  I think I have a shread of lingering doubt without a firm diagnosis that it's a huge amount of effort when I'm uncertain.  I considered EnteroLabs or Cyrex, but would rather buy a new VitaMix 7500 for the same cost as the tests.

 

Sigh.  I do want to thank the community in general for all the support and answers I've gleaned over the past couple years, I'm finally posting cuz I'm certain I will benefit from interactive support instead of just lurking.  Plus I'm here if anyone wanted to know that a gluten-free DF Caramel Corn rice cake contains 0.056 mg Fructans - I enjoy FructMal nutrient math.

 

Thanks for listening

 

 

0

Share this post


Link to post
Share on other sites


Ads by Google:

Welcome to the board.  :) I hope you keep feeling better. The menatal absorption starts to go away with time. i know that celiac disease was all I thought about at first. It gets easier.  :)

 

I have a new Vitamix too. I LOVE that thing. I can make veggie/fruit smoothies that my second son (pickiest eater in the world- I swear he only eats beige food) will eat and enjoy.  Yeah!

0

Share this post


Link to post
Share on other sites

Welcome Christy...you are in the right place.....we all have gone thru it...some very lucky souls transition quickly ... some not so quickly. Good news is it will get better..hang out...ask questions or just join in the small talk :)

I had one son that I used the smoothie trick on for years....he had no idea his yummy smoothie was loaded with veggies ... blueberries are great for making it purple ;)

0

Share this post


Link to post
Share on other sites

Nice to hear from you!

I really feel like a mental battle is overtaking me as the physical battle seems to be subsiding.

D

0

Share this post


Link to post
Share on other sites

Hi Christy!

It can be very overwhelming at first, but you sound as if you are figuring it all out very quickly.

We can be your cheerleaders!

 

As for the tests vs.kitchen appliance dilemma,  I would most definitely spend the money on the VitaMix (although I suspect 600 washings in vinegar did the trick :) )

New kitchen appliances are probably more useful to you than any of those online tests, IMHO

Plus, who doesn't like a new kitchen toy?

 

Veggie Smoothies rock.

 

Hang in there!

0

Share this post


Link to post
Share on other sites




Thanks for the warm welcomes and empathy lovely ladies.  My disjointed rambling amuses me, impressive that you were able to decipher anything out of it!

Could I have chosen a more cryptic title?  teehee  I sometimes work myself into a tizzy over details or oversights, which is what I meant by variable, maybe I should have said occasional overwhelm.

FructMal eliminates smoothies for me : pout : luckily I use my VitaMix for soup, "cheeze", "pudding" and I make my own arsenic rice milk : grin :
 
Wow, I just checked, I posted my recipes so long ago on my blog, I never updated them to the gluten-free versions.  I refer to my recipes as "reasonably palatable" to me they are terrific, but to a person without intolerances they are bland or weird.  Funny thing, I greatly dislike having to cook or even prepare food, yet this has forced me to have to adapt and get creative.
 
I do truly appreciate you all responding so quickly and enthusiastically, and in trying to reply, I am having this flood of stuff I want to share and I think it would be better if I used the blog feature here for that, I just didn't want to leave yall hanging while I write a novel of my gut history : winkiegrin :
 
[sidenote: For reference, I am a professional goofball, which does not always come across in text, and I have a habit of overusing emoticons to relay that hence I adopted DIY style : likethis : so don't worry that the forum software is having a glitch.]
0

Share this post


Link to post
Share on other sites

I confess...I did wonder about the title and thought maybe you got "spell-checked" ...

 

then figured...well, I am pretty sure I know what she means. :D  

0

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
      104,092
    • Total Posts
      920,313
  • Topics

  • Posts

    • I got cross contaminated some time ago & the rash came back pretty badly. I've attached a photo taken on June 11th of my back. It was also in my scalp, around my neck, on my front, shoulders, inner wrists and more.   Tonight I am not itching at all! I haven't itched all day long!!!! I can't take Dapsone because I'm allergic to sulfa drugs & Dapsone is a sulfa drug. Obviously that means I also can't take any of the other sulfa drugs that are used to treat dh after Dapsone is not an option. After those comes tetracycline. I really needed some relief! I began researching the dosage & particulars on tetracycline for dh. Extensive & exhaustive research did not pan out. The best I could find was treating Bullous phemphigoid. That said something like 500mg of tetracycline 4 times per day and about an equal amount of niacinimide. I really didn't want to take that much medication and in such strong doses. So my doctor (my PC doc) & I began experimenting. We tried Doxycycline 100mg twice a day. It seemed to be helping some but it just wasn't enough. Then we upped it to 200mg Doxycycline twice per day. It has taken about 5 days of that & I sit here not itching all day for the first time in a long, long time! This may not work for everyone. I did want to post it though as it is, at present, working for me. I am not thrilled at taking it but I have toughed this rash out before for years with no meds and I just couldn't do it again.
    • I laughed out loud at the 'little notebook' comment!😂 It has been interesting to see how much progress has actually been made over the past 10 years that there is even a notebook to be offered or a restaurant to eat in that will accommodate our 'allergy'. 10 years ago I feared that I would never eat in a restaurant again.  But the notebook comment is spot on.  Hopefully within the next 10 years restaurants will evolve enough to offer us a menu that clearly lists the delicious and extensive offerings that they have lovingly prepared just for us...and not just an ingredient list with nutritional values that take longer to read than War and Peace.   I am grateful that there are places to go that at least make the effort.  Who knows?  Eventually there may be restaurants which will have to offer menus with GLUTEN options available!
    • Thanks for posting this Adrien, it's a great list and I and others will appreciate the effort and the thought behind it. I loved my time in Malaysia and I'm glad I sampled all the food I could whilst I was still on an unrestricted diet. The good thing is that, like you say, some of the nice Malay foods are still ok. As a backpacker I survived on a lot of nasi goreng and laksa, nice to think if I return there I could still do the same Terima kasih!
    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
    • Thanks for sharing with me.  I really appreciate it.  Honestly, after a glutening last summer (still do not know what glutened me), I did not eat out for a year!  The risk was too great as my healing time took 3 months (for symptoms to subside) and six months to regain lost weight.  Our recent vacation to Europe was worth the risk  as we traveled with our entire extended family, but we were extra cautious and ate only at celiac-approved places.  Otherwise, we "dined" at markets or ate the food we brought from home.  Thankfully, we did not get glutened (at least we don't think so!)  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,122
    • Most Online
      1,763

    Newest Member
    ForeverYoung&GlutenFree
    Joined