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

Symptomatically Diagnosed Today

mcbeez

Recommended Posts

mcbeez Rookie
mcbeez
Posted

Hi all,

Just got back from the doctor after a 2 month long gluten challenge. I suppose I'll briefly tell my story -

I'm a 22-year-old (as of two days ago!!!) full-time college student/part-time server and bartender. Needless to say, I'm booked nearly 24/7. Two years ago, I was diagnosed with mono, which lasted 8 months. I never felt 100% after that. Extreme joint pain and weakness started in my left knee and moved to my fingers, wrists, and ankles. Continued fatigue, abdominal pains, you guys know the drill.

My mother and uncle had Celiac as children and were fortunate enough to outgrow it. According to my first doctor, I must have been predisposed for Celiac, and my weakened immune system during mono sparked it. She recommended I go gluten free, which I did for four months. After that, I began to realize that I needed an actual medical diagnosis. My university doctor told me to eat a gluten rich diet for two months, which I did.

It was hell. The last two weeks, especially, I've been dealing with menstrual-like cramps and night sweats, in addition to the usual fatigue, irritability, gas, depression, headaches, brain fog, and issues with balance. Needless to say, I've been kind of a mess. Today, I was diagnosed based on symptoms with Celiac and told to begin my gluten-free diet again immediately. My tTg tests will be back in two weeks. Since I don't have insurance, that's all I could afford right now. Still, having that verbal diagnosis is really helping me to restart my gluten-free diet tonight. I didn't do it perfectly the first time, but I'm absolutely determined right now.

Is anyone else both a vegetarian and living gluten-free? All of my favorite processed non-meat options are out the window now, so I'd love some help starting over.

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

Celiac.com Sponsor (A8-M):


Dixiebell Contributor
Dixiebell
Posted

Hi mcbeez.

That had to be hard to go back to eating gluten again. It sounds like your Dr. is trying to help you and it's good to hear you are headed in the right direction.

"My mother and uncle had Celiac as children and were fortunate enough to outgrow it"

This used to be believed to happen. If you have celiac you will always have celiac. It is a lifelong disease.

I also wanted to add that celiac is an inherited disease.

cyberprof Enthusiast
cyberprof
Posted

Hi all,

Just got back from the doctor after a 2 month long gluten challenge. I suppose I'll briefly tell my story -

I'm a 22-year-old (as of two days ago!!!) full-time college student/part-time server and bartender. Needless to say, I'm booked nearly 24/7. Two years ago, I was diagnosed with mono, which lasted 8 months. I never felt 100% after that. Extreme joint pain and weakness started in my left knee and moved to my fingers, wrists, and ankles. Continued fatigue, abdominal pains, you guys know the drill.

My mother and uncle had Celiac as children and were fortunate enough to outgrow it. According to my first doctor, I must have been predisposed for Celiac, and my weakened immune system during mono sparked it. She recommended I go gluten free, which I did for four months. After that, I began to realize that I needed an actual medical diagnosis. My university doctor told me to eat a gluten rich diet for two months, which I did.

It was hell. The last two weeks, especially, I've been dealing with menstrual-like cramps and night sweats, in addition to the usual fatigue, irritability, gas, depression, headaches, brain fog, and issues with balance. Needless to say, I've been kind of a mess. Today, I was diagnosed based on symptoms with Celiac and told to begin my gluten-free diet again immediately. My tTg tests will be back in two weeks. Since I don't have insurance, that's all I could afford right now. Still, having that verbal diagnosis is really helping me to restart my gluten-free diet tonight. I didn't do it perfectly the first time, but I'm absolutely determined right now.

Is anyone else both a vegetarian and living gluten-free? All of my favorite processed non-meat options are out the window now, so I'd love some help starting over.

1) Congratulations (on being on the path to good health) and welcome.

2) Gluten Free Goddess has a free, wonderful website/blog. She is (mainly) vegetarian and sometimes vegan. WONDERFUL cakes and cookies. She also has a primer on how to go gluten-free. Can't say enough good about her (try her carrot cake). Open Original Shared Link

3) FYI If your mother and uncle "had" celiac as children, they still have it (it's just asymptomatic). No one outgrows celiac. They most likely are still doing themselves damage.

mcbeez Rookie
mcbeez
Posted
  • Author

Thanks to both of you. I just forwarded that information to my mom, and I really hope she takes it into account. And thank you for the gluten-free goddess website! Looks fantastic!

cahill Collaborator
cahill
Posted

Welcome :)

Open Original Shared Link

this is a gluten free vegan recipe site . The recipes I have tried are very good

Darwin Rookie
Darwin
Posted

I can't imagine going back to gluten now, so that must have been horrible. I'm glad you are back on the right track. I am not fully vegetarian, but do not eat a lot of meat, so I eat vegetarian often. For convenience foods, I have seen a lot of stuff in the freezer section of Whole Foods or local natural foods stores (I live in a small town, so the little local store is all we have). Though, convenience foods can be expensive. We usually make large meals so we have leftovers which kind of make convenience food as we are both really busy, also.....you could probably freeze some stuff. If you haven't tried it, quinoa has become a big staple in our house and is delicious and marginally fast to cook. Also, if you do not have a soy allergy, edamame is good. We like to buy the individually wrapped small packages for snacks. Both have a complete set of amino acids and are good meat replacers. There are a lot of gluten free blogs out there that are full of recipes. Also, don't discount the non-gluten-free sites, too. Once you get the hang of it, you can figure out which recipes are naturally gluten free and many of them are fast for a person on the go. Good luck!

mcbeez Rookie
mcbeez
Posted
  • Author

tTg test came back negative. Doc says to stay gluten-free and come back in to see her, but I'm so confused and frustrated.

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

Good on your doc for telling you to stay gluten free. There are oodles of people who should not eat gluten, celiac diagnosed or not. And very few doctors who will tell them not to eat gluten. But in fact, celiacs are in the minority of the gluten intolerant group. They just happen to be a group for whom tests have been devised. :P How were your mom and uncle diagnosed? Did they have the biopsy?

NancyL Explorer
NancyL
Posted

I'm a 22-year-old (as of two days ago!!!)

IThe last two weeks, especially, I've been dealing with menstrual-like cramps and night sweats, in addition to the usual fatigue, irritability, gas, depression, headaches, brain fog, and issues with balance.

first off, Happy Birthday! :)

Also, your symptoms sound a LOT like mine. I don't have a Celiac diagnosis (yet) but I feel pretty sure that I have it or something like it. I'm just starting the gluten free thing now that the majority of my tests have been run. I'm only on day 2 but I was very pleasantly surprised how many gluten free things there are in the stores. You've made me remember that there was a time (about 18 years ago) that I didn't have these symptoms and I was vegetarian at the time... thus I was probably eating a decent gluten free diet without realizing it (I'm not a big carb lover so was lots of fruits, nuts and veggies).

tinkity Newbie
tinkity
Posted

It can be very frustrating to not have an official diagnosis that is easily proven. Trust me, I know. I have been experiencing many health problems for a very long time. I have been gluten free for 2 months now, and I seem to be getting better and better. My results were negative (if not slightly iffy) as well. All I can say is if it's working for you, there must be something to it. Some things they simply cannot test for, and if they can then they are not always accurate unfortunately. Go with your gut (:D) and you should be on the right track.

I am (was) also vegetarian. I haven't eaten beef in 20 years, chicken/pork/turkey/etc. in 15 and (until recently) fish in 5 or 6 years. I caved and have begun eating fish. This was due to nutritional problems and finding intolerances to so many things that I have been eating in place of meat. There are, however, many wonderful foods you can eat as a vegetarian; you just need to think simply. Beans, nuts, seeds, yogurt, grains like quinoa and rice, tofu, fruits and veggies obviously... there is also a brand called Quorn that makes a couple realy yummy gluten free 'meats'. Not sure how sensitive you are, but they do produce products that contain gluten so keep that in mind.

It can be frustrating and rough when you have a situation like yours, but keep going. Trust yourself and your instincts. ;)

mcbeez Rookie
mcbeez
Posted
  • Author

tinkity - I actually started eating fish again as well! As for the brand you mentioned - I'll definitely check it out. I'm trying to stay positive about all of this, since it's kind of forcing me to stay away from processed foods (though I'm still a sucker for Envirokidz Panda Puffs!!!!)

Above all else, though, I'm so thankful to have found this forum. It's great to know that I can get responses from people dealing with the same thing, especially since I don't have insurance and couldn't afford it otherwise. You guys are all rockstars!!

mcbeez Rookie
mcbeez
Posted
  • Author

Mushroom - Good question! My grandma didn't mention, but I'm going to ask her tonight.

NancyL - Thanks so much for the birthday wishes! I hope you start seeing results super soon. :)

tinkity Newbie
tinkity
Posted

mcbeez- How have you been feeling? I am two months gluten-free today actually, and things are still up and down- but better and better. There are so many things that seem to be improving that I couldn't have fathomed would have been related.

mcbeez Rookie
mcbeez
Posted
  • Author

I'm not overwhelmingly improved yet. I still get horrible nightsweats every night. But, I am noticing a bit more energy than I've had over the last two months. So glad to hear that you're starting to feel better! Here's to it continuing even more in that direction. Congrats on the two months :)

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. Churley
      - Churley replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
    2. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions...
    3. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know. I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past...
    4. nanny marley
      - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I...
    5. David Blake
      - David Blake commented on Scott Adams's article in Product Labeling Regulations
      1

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

      My question I have proposed to the FDA through their website is why Prescription and OTC drug manufacturers are not required to list what binding ingredients were used to bine the drug? They list this on Capsules which are made of cellulose but not on pills? As it stands I or my pharmacist must contact the manufacturer to find out and my list is long from...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,346
    • Most Online (within 30 mins)
      7,748
    Scottweath
    Newest Member
    Scottweath
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Churley
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Churley · Posted

      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Insomnia help

      By nanny marley · Posted

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      nothing has changed

      By nanny marley · Posted

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
×
×
  • 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.