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New Diagonsis, New Diet

Adalaide

By Adalaide
in Coping with Celiac Disease

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Adalaide Mentor
Adalaide
Posted

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.

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Strawberry-Jam Enthusiast
Strawberry-Jam
Posted

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
love2travel
Posted

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
mommida
Posted

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
mommida
Posted

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
Adalaide
Posted
  • Author

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
Raven815
Posted

(((Hugs)))

Love, Laura :wub:

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GFinDC Veteran
GFinDC
Posted

(((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
IrishHeart
Posted

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
squirmingitch
Posted

((((BIG HUGGIES)))))

Adalaide Mentor
Adalaide
Posted
  • Author

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.

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    • knitty kitty
      High DGP-A with normal IGA

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      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
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      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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