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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,181
    • Most Online (within 30 mins)
      7,748

    ViRose
    Newest Member
    ViRose
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.7k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      Once you have removed the inflammatories, it is time to focus on the deficiencies.  A lot of them not specific to Celiac, but deficiency in them elicits symptoms associated with Celiac. According to research, celiac disease tends to be more prevalent in urban areas compared to rural areas.  Same is true with airborne viruses.  Because urban residents get less sunlight.  To top it off we use lotion and gear to block the little light there is.  This compremises the vitamin D blood level.  A virus attack further lowers vitamin D and the immune system loses control over the Celiac genes and they go into acute symptoms. 40% to 75% depending depending on country are vitamin D deficient. 50% do not eat the Adequit Intake for potassium (4700 mg a day) 90% do n ot eat the Adequit Intake for Choline. Iodine intake since 1970 had dropped 50%.  The western diet is typically excessive in omega 6 fatty acid compared to omega 3.  Above 14:1 by some estimates.  So they sell us expensive, processed oils to compensate.  Anyway after 10 years gluten free myself,  here is what has helped me in just the past few years; once I realized I was at a healing plateau and just GFD would not cut it, and reallized my deficiencies.  Most recently, I started a statin which I only took for two weeks before it started to cripple me.   Got a prescription for Nicotinic Acid to 2000 and am more flexible now Plus HDL went 29 to 44, eGFR from 55 to 79. I also learned if the pharmacist gets a prescription for Niacin that it is dealer's choice whether you get Nicotinic Acid or Niacinimide.  And it comes out of a regular vitamin manufacturer.   "likely deficiencies and what I take to boost my intake (I get anorexic at the drop of a hat so I take them to keep me stable):  the ones that helped me the most noticibly Was increasing vitamin D blood level to 80 ng/ml and Iodine to 500 mcg once or twice a day, Thiamine, Choline, and Iodine. 10,000 IU vitamin D 500 mg Thiamine or more Choline Iodine – 600 to 1200 mcg of Liquid Iodine Vitamin B2 helps break down proteins, fats, and carbohydrates. It plays a vital role in maintaining the body's energy supply.  500 mg Nicotinic Acid - increase capillary blood flow, lower cholesterol. I recently started 2000 mg a day instead of a statin which I cannot tolerate. I the first month my HDL went from 29 to 44. eGFR (kidney function) jumped from 55 ti 75. It also has make my whole body less stiff. The ichy, flushing with the first few doses goes away. The non flush forms of vitamin B3 do not work. It is the relaxing of the capillaries and tendons. 500 mg Pantothenic Acid vitamin B5 Omega-3 and Omega-6 Fatty Acids in Vegetables  Eating more of the vegetables low in omega six and high omega 3 can reduce inflammation Whole Milk Vanilla yogurt to which I add 100 grams of raspberrys, black berries and blueberries has lots of probiotics and makes my tummy and body happy. Red Bull has sugar (not high fructose corn syrup) and the vitamins (B2,3,5,6 need to metabolize to ATP energy and Taurine as an antioxident). It is a good source of energy for me because my genetic hyperlipidemia does not process complex carbs well.        
    • trents
      Gluten-like cross reactions to other foods are from the proteins that make them up. Dextrose is the sugar component found in corn.
    • Ryangf
      I just found out a few days ago that some salt like table salt contains dextrose that’s derived from corn. I’ve been thinking about getting rid of using table salt and just using my own kosher or Himalayan salt, but tbh I’m reluctant to do it. I’ve cut out a lot of things and I don’t really want to cut out anything else that I’m not sure will effect me…in a super small amount that it might be added to salts to stabilize the iodine. I don’t want to be further alienated when I have to go to a restaurant with my friends. Also most of the items at my house that have salt in it canned food etc. are some of the few quick things I can eat- because I’m not the one paying for the food in my household and i can only ask for so much. I’m not in a place financially where I can get a lot of my specialized items- although my family tries their best to get items I Can actually stand. I get I can bring a my own salt with me at a restaurant and ask for no seasoning but it feels like a lot to me- cause I already check for cross contamination and ask if the food has like a high volume of corn in it like cornstarch etc. I’ve also heard most dextrose is not derived from the Zein (corn gluten) portion of it- so it might be safe- but idk if that’s true. I just wanna know if anyone actually responded to it negatively.
    • Scott Adams
      For my first couple of years after discovering my celiac disease I also had to avoid cow's milk/casein and eggs, as well as other things, but could tolerate duck eggs and sheep and goat's milk products. I'm not sure if you've tried those, but it could be worth testing them out.
    • knitty kitty
      Hello, @Kwinkle, How are you doing?   Have you tried adding a Magnesium supplement?   The B Complex vitamins need magnesium to work properly, especially thiamine vitamin B 1.   Magnesium deficiency symptoms and Thiamine deficiency symptoms both include gas and bloating.  Thiamine deficiency symptoms also include loss of appetite and fatigue.   My gas and bloating resolved rather quickly when I took Benfotiamine (a form of thiamine shown to promote intestinal healing) and Magnesium Glycinate in addition to my B 50 Complex (all twice a day plus the following...).   I found Magnesium L-Threonate or Magnesium Taurate are better when taken with a form of thiamine called TTFD (Tetrahydrofurfuryl dusulfide) because all of these cross the blood brain barrier easily, which corrects the loss of appetite, fatigue and anxiety.    Like @Celiacandme said, keeping a food/mood/poo'd journal is a big help in finding problematic foods, and for making sure your diet is not carbohydrate heavy.  If you're eating a lot if processed gluten free facsimile foods, be aware they do not have vitamins and minerals added to them like their gluten containing counterparts.  For every 1000 kcal of carbohydrates, we need an extra 500 mg of thiamine to turn them into energy and not store them as fat.   Let us know how you're doing!
×
×
  • Create New...