Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

New Diagonsis, New Diet


Adalaide

Recommended Posts

Adalaide Mentor

So I have an answer for my blurred vision. Apparently I have pseudotumor cerebri. Basically, the I have too much spinal fluid which is creating too much pressure in my head and pressing on my eyes. It's also probably causing the migraines I got this week and the frequent headaches and some other problems. I go back next week to see if tests point to lupus as the underlying cause and if I need a lumbar puncture to relieve pressure.

This all sounds like good news right? I mean, I have answers and it's treatable. As long as I follow the treatment I can probably keep my symptoms in check and keep my vision. The problem is the treatment. Along with drugs (which I can't fill because I didn't get home before my "cheap" pharmacy closed to check the gluten free status) I have to follow a strict tyramine free diet. I'm pretty sure I had a look of horror on my face as the doctor handed me the list and I saw the first thing on it. No chocolate. Not now, not ever, not for the rest of my life. It took a few hours to really set in, but I've gone from a this sucks attitude to crying, whining, wondering if I can really just have a little.

So, there's a whole list of things I can't go near besides chocolate. No soy, no processed meats, no aged cheese, no beans, no peas, no spinach. Nothing fermented, cultured or pickled, no yeast. (Nevermind the 9 cucumber plants that just started flowering this week that I planted just so I could make pickles by the gallon.)

Anyway, right now I'm just feeling sorry for myself. I overwhelmed by having to go through this all over again. Learning what I can and can't eat, learning to shop again. I'm more or less restricted to fresh and frozen unprocessed foods. (And for some reason the "safe" list had Velveeta on it so damn it I bought the biggest brick I could find.) What I want to do tonight is go out and order what used to be my favorite pizza, pick up a six pack of Guiness and follow it all up with some chocolate cake. What I'm going to do is eat chicken and pretend it will all go away tomorrow. I don't really need advice or whatnot, I just wanted to come complain and whine to people who get it.


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



Celiac.com Sponsor (A8-M):



Strawberry-Jam Enthusiast

wouldn't it be nice if we could just eat gray mush every morning and it would fill our stomachs and provide us with all the nutrition we need for the day? or, better yet, a series of pills, pop pop pop all the nutrients you need and you won't feel hungry any more ever.

I wish it were like that instead :(

love2travel Mentor

Oh, I am so very sorry that you must go through this all over again. :( The shock of it all must be enormous and hard to bear. Stick with me - I'm not a chocolate fan so we could hang out together! :) The other things would be very tough. Anyway, I empathize with you and your plight. As we always say on here once you get your head around it it WILL get better. Talk about c.com's greatest cliche! But it is true. Meanwhile, after you've had your chocolate cake, take a deep breath and remind yourself that you can and will do this.

Man, the things we must go through for the sake of our health! Sometimes it can be a litle much. Go ahead. Get angry. Grieve. When your dumb cucumbers grow throw them over your fence at your neighbour's house or something.

Hang in there - we are here for ya! :P

mommida Enthusiast

Hang in there kiddo.

We all have adjusted to gluten free. You can take the substitute choices for old favorites and make do with this too.

A little on-line help from friends for some research ideas please. Give us more basic infomation on your new avoid list.

Carob? White chocolate (which I really have heard isn't chocolate at all)? Vegan recipes that "fake" everything (for healthy replacements ~ I'm not wording this great but understand I'm not dissing vegans, just need to really think outside of the box recipes.)

We will get you through this! Come on forum, our girl needs some support! :)

mommida Enthusiast

Carob is tyramine FREE! But it is considered a cousin of the pea (legume ~ soy)

I would consult a nutritionist/ allergy specialist.;)

Quick search information says white chocolate does not contain tyramine either.

Adalaide Mentor

Thanks. I appreciate the suggestion of white chocolate but frankly I won't touch the stuff. There isn't any chocolate in it and it is nothing more than an edible lie. (Also it tastes nasty.) I'll check into carob, the list the doctor gave me says I can't have it but from what I've found so far there are plenty of foods that are in the "maybe" area where one test says it's safe and another says it isn't. Honestly though, right now I don't want a replacement for chocolate that tastes sort of like it. I want chocolate.

I just need to spend some time researching everything. It's all just overwhelming right now and I'm more or less content in my misery for the night. Maybe tomorrow or Sunday I'll bother with caring and coping, but I just don't feel like it right now.

Oh, and the idea that we could have like some sort of all encompassing mush or some such that would fulfill all our nutritional needs and keep us from being hungry is brilliant. Let me know when you've invented it.

Raven815 Rookie

(((Hugs)))

Love, Laura :wub:


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



Celiac.com Sponsor (A8-M):



GFinDC Veteran

(((Hugs Adleaide!))) :)

Well, shoot, sounds like some more diet adjustment but at least you have practice with that stuff. Wondering if it is the cucumbers or the pickles? Maybe you could make cucumber chips in the oven to use them? And maybe we can find a good carob source for you that is gluten-free. It may not be the exact same taste but it works.

Keeping your vision seems like a good trade to me...? :)

IrishHeart Veteran

oops, well, I gave you the high fiber veggies list on the other thread you started before I knew all this, sorry. :( Choose the ones that fit your menu plan.

Yes, it is quite daunting to keep making adjustments to our diets and I can truly sympathize!

But if it gets rid of your headaches and you can keep your vision, then good.

Hope you feel better soon.

((hug))

squirmingitch Veteran

((((BIG HUGGIES)))))

Adalaide Mentor

Thanks for all the hugs and support, I really needed it. I'm done feeling sorry for myself. I'll find out in the next two days if this is permanent (everything I read suggests it is) or if I can switch to a "eat with caution" sort of diet once my vision is restored.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,403
    • Most Online (within 30 mins)
      7,748

    Jackie Pounds
    Newest Member
    Jackie Pounds
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • KimMS
      Thanks for sharing this! Have you started taking the Amneal? I'm curious how it's going for you. My pharmacy gave me the option of Accord, Macleod or Amneal. I didn't realize that Amneal was formerly Lannett, or I might have chosen that one. However, I did read some anecdotal reports that some people had side effects with Amneal, so I chose Accord. I have been taking it for 3-4 weeks and the past 10 days I have developed extreme fatigue/sluggishness, joint pain and some brain fog. I don't know if it is the new levo med, but nothing else has changed. Has anyone else taken Accord levo? Any issues? It seems to fall into the "no gluten ingredients, but we can't guarantee 100%, but it's likely safe category." I'm wondering if it is worth switching to Amneal or at least getting my thyroid levels checked. If the med is causing my symptoms, I'm guessing it's not because of gluten but maybe the potency is different from Mylan and I need different dosing. Accord was recalled for lower potency, but my pharmacist said the pills I have were not part of that lot.  
    • Mrs Wolfe
      I appreciate the information and links.  
    • Mrs Wolfe
      Thank you for the information.   
    • Wheatwacked
      In 70-year-olds, DHEA (Dehydroepiandrosterone) levels are significantly lower than in young adults, typically around 20% of youthful levels, according to the National Institutes of Health (NIH) | (.gov). This decline is a natural part of aging, with DHEA production decreasing from its peak in the third decade of life. While some studies suggest potential benefits of DHEA replacement in older adults, particularly in women, results are not consistently positive across all studies. 
    • Wheatwacked
      Welcome @bold-95.   That's a tough situation.   Understanding DHEA Deficiency in Menopausal Women A major cause of hypothyroid is iodine deficiency.  In the 60's bread had 90 mcg, milk 100 mcg per cup and we used iodized table salt.  A sandwich and glass of milk supplied 300 mcg,  Now in the US bread does not use iodine as dough condition, milk has a bad name and table salt is avoided.  Net reduction from 1970 to 1984 of 50% of iodine intake.   Urinary iodine levels (mg/dL) in the United States, 6-74 years of age NHANES I, 1971-74 Median 32.00 2NHANES III, 1988-91 Median 14.5 NHANES 2000 Median 16.1 There has been a trend for increased prescribing of levothyroxine (LT4) in the United States.  LT4 was the tenth and seventh most commonly prescribed drug based on the number of prescriptions in 2005 and 2006, respectively. From 2008 to 2011 the number of LT4 prescriptions rose from 99 million to 105 million, with LT4 being the second most prescribed medication.1 From 2012 to 2016 the number of annual LT4 prescriptions increased steadily from 112 million to 123 million, with LT4 being the most prescribed medication.2,3 During 2017 and 2018 LT4 was the third most prescribed medication, with 98 million Levothyroxine prescriptions trends may indicate a downtrend in prescribing. DHEA and hypothyroidism are linked, with some evidence suggesting that low DHEA levels may be associated with hypothyroidism.
×
×
  • Create New...