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

Hello--New & Scared

Michlootz

Recommended Posts

Michlootz Newbie
Michlootz
Posted

Hi! I am very new to the celiac world last week had blood test and my GI doc told me it was positive for celiac disease.My tTG was 100, I am having an endiscopy on Jan 10. Will the doctor be able to tell me right away or will I have to wait again for results? I plan to go gluten free on Jan 10. :( I was diagnosed 15-20 years ago had extremely bad runs and lost about 30 pounds that lasted for several months. After going to several GI's last one told me back then I had ciliac disease-- (don't remember what was done) but the next day the runs stopped and never started again--so I continued to eat everything & anything. This past year, I developed an annoying itch, blood test from dermatologist found elevated platelets 575 at highest. Went to hematologist/oncologist and platelet levels had dropped to 435 by then,(stop craving pretzels) but he ordered all the cancer tests-- and came back negative. :)) He took platlets again and dropped couple more points. Reading something about thrombosytis (sp) and it mentioned celiac disease and jogged my memory. This past year I also suddenly developed a severe craving for honey wheat pretzels and consumed half bag a night for quite awhile--that is when itching in hair and face usually sometimes all over) increased---then the craving just stopped. No blisters or rash on skin, but have had lots of canker soars especially over the past few years, also tingling in my legs I thought was Restless Legs.Took Hylands Restful Legs and then it went away when taken. I don't know which way to turn, have started buying gluten free foods in Whole Foods, but WOW, really expensive!! I don't like to bake so that's out. I really don't like to cook much either. Hubby does most of the cooking, he's Italian so we eat lots of pasta. Now I hear about cross-contamination and am really worried to let him do the cooking as he might forget. I read the Newbie 101 and had good info, but am feeling over come by all of this on what to eat and not eat--pluse the expense worries me too--we live on a fixed income.Nobody told me at the dr's office about how you have to eat gluten till they do the biopsy so ran out right after appointment and got gluten free stuff--thank heavens I read you have to eat normally BEFORE the endiscopy for it to be accurate. Everyone keeps telling me how great I am going to feel, but I feel good now, minus the annoying itch and canker soars.

Please help can anybody give me some pointers I am feeling soooo alone...Thanks for letting me vent.....

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

Celiac.com Sponsor (A8-M):


shadowicewolf Proficient
shadowicewolf
Posted

Its not as bad as it sounds. Really. I'm getting close to two years in, and it has become normal for me.

First off, gluten free foods are expensive. No doubt. It is best to do a whole foods diet (nothing processed!) for the first few months. But, if you just have to have something, a substitute can be found in the gluten free goodies. I don't bake a lot myself, but i have gotten pretty good at making coffee cake :)

Ollie's Mom Apprentice
Ollie's Mom
Posted

For your hubby - tinkyada rice pasta is excellent. My non-gluten-free friends say it tastes like the real thing.

The diet is doable. It just takes some getting used to. You have to get into a whole new mindset.

And as for the cost, I actually find my grocery bill is smaller now because I buy mostly whole foods. The processed stuff (whether gluten-free or not) is expensive.

You've definitely come to the right place for advice and support. Good luck!

GottaSki Mentor
GottaSki
Posted

Welcome!

This really is very good news - I won't kid you - the transition is tough, but once you learn how to replace all your favorites life becomes much easier and you gain health!

Read as much as you can and ask loads of questions - it really does help speed the transition.

GFinDC Veteran
GFinDC
Posted

Hi Michlootz,

Welcome to the forum! :) Doctors used to think children outgrew celiac disease, but we now know that is wrong. So if you had it 20 years ago you still have it today. It just doesn't go away. Sometimes children do have a period of reduced symptoms for a while, and that's why they used to think celiac would go away. But the symptoms always come back later.

The first couple months of gluten-free can be a bit tough, getting used to eating different foods. You should really start doing your own cooking though. Like it or not, your health depends on eating gluten-free. Starting out you should plan on eating mostly whole foods, and very little processed foods and baked goods. Foods like plain meats, fruits, vegetables, and most nuts are naturally gluten-free. So they don't cost any more for us than they do for other people. And processed foods are expensive compared to cooking whole foods. You pay for a lot of packaging and marketing when you buy processed foods. If you can find Mission brand or other corn tortillas they are a cheap sub for bread. You can warm them up a little and make wraps. Don't get the flour tortillas though. Chex gluten-free breakfast cereals and gluten-free Pebbles are ok. Betty Crocker has gluten-free cake mixes too.

If you aren't cooking your own food, it is difficult to know what ingredients are causing you symptoms. So sticking with simple foods with limited ingredients is good.

DavinaRN Explorer
DavinaRN
Posted

It is an adjustment...for me it was easy to say no (stomach virus sick within an hour, most recent episode ended with ER trip for anaphylactic shock--testing Jan 11 for wheat allergy vs gluten intolerance with secondary allergy). As to what to eat, I prefer the combination flour pasta (corn, quinoa), even DH said it was good. We do cook both, separate strainers. It is just to expensive to feed 10 people gluten free pasta when I'm the only one with issues-just Sunday dinner, don't feed that many daily :)

Breakfast is usually egg substitute omlets or chex cereal. Lunch is either left overs or turkey/cheese roll-ups and chips. Make sure to read the labels, some lunch meat has gluten. Chips do also such as Pringles (which happens to be my favorite).

Michlootz Newbie
Michlootz
Posted
  • Author

Thanks to those that posted a reply to me. It sure feels good to know there are others just like me out there. :) I forgot to mention I also have diverticulitis too--so all Nuts are out for me-and Pop Corn too. :( That was disovered when I had a colonoscopy done a few years ago. Does anyone know if olive oil is gluten free, or what brand can I get that is? How about mouthwash & pesto sauce is it, or could anyone know what brands are gluten free?......Thanks!..... :blink:

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

There is no gluten in oilive oil, and there shouldn't be in pesto. Mouthwash probably not, but as always, check the label.

GFinDC Veteran
GFinDC
Posted

Hi Michlootz,

The endoscopy should include taking biopsy samples, 5 to 8. The biopsy samples are usually sent to a lab for review. So the results can take a week or 2. It is usually ok to start the gluten-free diet while waiting for the results, but there have been times when the results were lost and the tests had to be redone. That's unusual tho.

There is a skin rash called dermatitis herpetiformis that some celiacs get. It causes intense itching.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

Helpful threads:

FAQ Celiac com

http://www.celiac.co...celiac-disease/

Newbie Info 101

http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?

http://www.celiac.co...reakfast-today/

What Did You Have For Lunch Today?

http://www.celiac.co...or-lunch-today/

GlutenFreeIsTheBest Rookie
GlutenFreeIsTheBest
Posted

I agree with GFinDC completely about cooking yourself. When you cook at home you always know you are safe from gluten, but when you eat out you are always risking someone doesn't understand cross-contamination.

Other advice I can give is don't worry about replacement foods...they normally just disappoint. (gluten free bread, brownies, cookies, etc)

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,188
    • Most Online (within 30 mins)
      7,748
    Leeila
    Newest Member
    Leeila
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Ginger38
      Food Allergies

      By Ginger38 · Posted

      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Bread choice for a newbie

      By Kris2093u4 · Posted

      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      7yo struggling!

      By JForman · Posted

      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      My mo,ther married a bread making when I was 4

      By Jane878 · Posted

      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Blood results

      By trents · Posted

      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...