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

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

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

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

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

Welcome :)

Open Original Shared Link

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

Darwin Rookie

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

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

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

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

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

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

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

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

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.

  • 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. - trents replied to Rejoicephd's topic in Related Issues & Disorders
      1

      Basic metabolic panel results - more flags

    2. - trents replied to xxnonamexx's topic in Related Issues & Disorders
      1

      Self Diagnosed avoiding gluten 7 months later (Not tested due to eating gluten to test) update and question on soy

    3. - Rejoicephd posted a topic in Related Issues & Disorders
      1

      Basic metabolic panel results - more flags

    4. - xxnonamexx posted a topic in Related Issues & Disorders
      1

      Self Diagnosed avoiding gluten 7 months later (Not tested due to eating gluten to test) update and question on soy


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,319
    • Most Online (within 30 mins)
      7,748

    Mamadook07
    Newest Member
    Mamadook07
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      I have many of those same CMP irregularities from time to time, with the exception that my potassium is always normal. What I can tell you is that it is normal for everything not to be normal when you get a CMP done. I used to get a CBC and CMP done annually and there were always some things out of spec. Docs don't get excited about it for the most part. It depends on the particular parameter (some are more important than others) and it depends on how far out of range it is. Docs also look for trends over time as opposed to isolated snapshots of this or that being out of spec at any given time. Our body chemistry is a dynamic entity. 
    • trents
      Not sure what you mean by "soy being like gluten". Soy does not cause a celiac reaction. However, soy is one of the foods that many celiacs don't tolerate well for other reasons. Eggs, corn and dairy are also on that list of foods that many of those with celiac disease seem to be sensitive to. But that doesn't mean that all celiacs are sensitive to any one of them or all of them. It just means it's common. You may not have a problem with soy at all. Celiac disease is not a food allergy. It is an autoimmune response to the ingestion of gluten that creates inflammation in the small bowel lining that, over time, damages that lining.
    • Rejoicephd
      Hey all  Has anyone on here experienced any of the following on their basic metabolic panel results ? This is what mine is currently flagging : - low sodium  - nearly too low potassium - nearly too low chloride - high CO2  - low anion gap  This is now after being nearly gluten-free for over a year (although I admit I make mistakes sometimes and pay dearly for it). My TtG went down to undetectable. I was so sensitive to so many foods I am now avoiding meat dairy and don’t eat a lot of cooked food in general (raw veggies, white rice, avocados and boiled eggs are my usual go-to meal that doesn’t make me sick). But my abdomen still hurts, i have a range of other symptoms too (headaches that last for days before letting up, fatigue, joint pain, bladder pain). Anyway im hoping my urologist (that’s now the latest specialist I’ve seen on account of the bladder pain and cloudy urine after eating certain foods) will help me with this since he ordered this metabolic panel. But I’m bouncing around a lot between specialists and still not sure what’s wrong. Also went back to the GI doctor and she thought maybe the celiac is just not healed or I have something else going on in the colon and I should have that looked at too. I’m still anemic too BTW. And I’m taking sooo may vitamins daily. 
    • xxnonamexx
      I know I haven't been tested but self diagnosed that by avoiding gluten the past 7 months I feel so much better. I have followed how to eat and avoid gluten and have been good about hidden gluten in products, how to prep gluten-free and flours to use to bake gluten-free and have been very successful. It has been a learning curve but once you get the hang of it and more aware you realize how many places are gluten-free and contamination free practices etc. One thing I have read is how soy is like gluten. How would one know if soy affects you? I have eaten gluten free hershey reeses that say gluten free etc some other snacks say gluten free but contain soy and I dont get sick or soy yogurt no issues. Is there adifference in soys?
    • knitty kitty
      Check your multivitamin to see if it contains Thiamine Mononitrate, which is a "shelf-stable" form of thiamine that doesn't break down with exposure to light, heat, and time sitting on a shelf waiting to be sold.  Our bodies have difficulty absorbing and utilizing it.  Only 30% is absorbed and less can be utilized.   There's some question as to how well multivitamins dissolve in the digestive tract.  You can test this at home.  YouTube has instructional videos.   Talk to your nutritionist about adding a B Complex.  The B vitamins are water soluble, so any excess is easily excreted if not needed.  Consider adding additional Thiamine in the forms Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) or thiamine hydrochloride.   Thiamine is needed to help control electrolytes.  Without sufficient thiamine, the kidneys loose electrolytes easily resulting in low sodium and chloride.   We need extra thiamine when we're emotionally stressed, physically ill, and when we exercise regularly, are an athlete, or do physical labor outdoors, and in hot weather.  Your return to activities and athletics may have depleted your thiamine and other B vitamins to a point symptoms are appearing.   The deficiency symptoms of B vitamins overlap, and can be pretty vague, or easily written off as due to something else like being tired after a busy day.  The symptoms you listed are the same as early B vitamin deficiency symptoms, especially Thiamine.  Thiamine deficiency symptoms can appear in as little as three days.  I recognize the symptoms as those I had when I was deficient.  It can get much worse. "My symptoms are as follows: Dizziness, lightheaded, headaches (mostly sinus), jaw/neck pain, severe tinnitus, joint stiffness, fatigue, irregular heart rate, post exercise muscle fatigue and soreness, brain fog, insomnia.  Generally feeling unwell." I took a B 50 Complex twice a day and extra thiamine in the forms Benfotiamine and TTFD.  I currently take the Ex Plus supplement used in this study which shows B vitamins, especially Thiamine B 1, Riboflavin B2, Pyridoxine B 6, and B12 Cobalamine are very helpful.   A functional evaluation of anti-fatigue and exercise performance improvement following vitamin B complex supplementation in healthy humans, a randomized double-blind trial https://pmc.ncbi.nlm.nih.gov/articles/PMC10542023/
×
×
  • 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.