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

Newly Diagnosed- Need Help!


eblue

Recommended Posts

eblue Apprentice

Hey everyone,

So I am new here. After 4 years of being misdiagnosed I tested positive for Celiac disease last week. I went through 4 horrible years of bloating, weight loss, stomach cramps, gas, diarrhea, body aches, brain fog, and constant fatigue. I am so thankful for a diagnoses with the hopes of feeling back to normal soon.

 

But I am also very overwhelmed!

 

There is so much more to this than I thought. Do any of you have any advise? I am trying to learn all of the things that gluten is "hidden" in so that I can be very careful to remove it 100 percent from my diet. I know the obvious things like wheat, barley, and rye..but I am learning that there are other things to look out for such as Malt and modified food starch. Any suggestions or knowledge..? 

 

Also, what about things such as lip stick, lotions, and shampoos/ conditioners? Is there a certain brand I should buy?

 

I would be very appreciative of any advise/wisdom!!

 


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



Celiac.com Sponsor (A8-M):



shadowicewolf Proficient

Modified food starch does not contain wheat in the US i believe.

 

Go read the Newbie thread in the coping section, it will help you alot.

tasha71577 Newbie

I am in the same boat as you. One of the surprises for me was that Soy Sauce contains gluten unless you buy gluten free. So do many asian sauces. I spent a lot more time food shopping in order to shop gluten free. Once suggestion my mother in law had that worked was to go to customer service at the supermarket and ask for a list of gluten free foods they carried. I was at a speciatly supermarket and they were able to provide it. It really helped me shop. Good luck.

 

I was also told to go dairy free, which makes it doubly difficult.

IrishHeart Veteran

Welcome to the family!  

 

May I direct you to: 

 

(1) this thread for newbies--please read it--lots of good info there (some lady I know wrote it  )

 

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

 

 

 

and  

(2)   I recommend:

 

"Find Me Gluten Free"  for dining out

 

and

 

(3) I also HIGHLY recommend this must-read book:

 

Real Life with Celiac Disease

by Melinda Dennis and Daniel Leffler

 

Best wishes to you! we're here for you!

 

I promise you, soon you will see that all your favorite foods are not gone forever--they are just made with different flours.  We all eat plenty!!

 

I love this website too!!!

 

Open Original Shared Link

 

IrishHeart Veteran

.

 

I was also told to go dairy free, which makes it doubly difficult.

 Lactose intolerance is temporary for the majority of celiacs.

 

Lactase, which is the enzyme that breaks down the sugar lactose, is produced in the tip of the villi.

When the villi get blunted in celiac disease, sometimes the ability to digest lactose is decreased and you can become lactose intolerant. This may cause bloating, stomach cramps, diarrhea, etc. After you go gluten-free, the villi will heal and most people are able to tolerate dairy foods again.

 

Give it a few months and try it again.

 

best wishes.

bartfull Rising Star

And don't be surprised if you break down and cry at the grocery store a time or two. I think most of us did at the beginning. Not only are you learning a new way to eat, but your body is going through real withdrawal which will make you more emotional than usual. It felt like the end of the world at first, but honestly, not only will you adapt, but you will THRIVE.

 

But if you need to come here and rant and cry and have a total meltdown, feel free. We have all been there, and we will give you the hugs and advice and support that you need.

 

 

OH LOOK!! There's one now!!!  ((((((HUG))))))

tasha71577 Newbie

 Lactose intolerance is temporary for the majority of celiacs.

 

Lactase, which is the enzyme that breaks down the sugar lactose, is produced in the tip of the villi.

When the villi get blunted in celiac disease, sometimes the ability to digest lactose is decreased and you can become lactose intolerant. This may cause bloating, stomach cramps, diarrhea, etc. After you go gluten-free, the villi will heal and most people are able to tolerate dairy foods again.

 

Give it a few months and try it again.

 

best wishes.

Thank you for the info. If I could have dairy, the gluten free diet would be a lot easier.


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



Celiac.com Sponsor (A8-M):



GlutenStinks15 Explorer

One of the first things I did (after I joined this page) was see a nutritionist. She told me exactly which deficiencies my doctors should be testing for and gave me lots of great info.

 

Definitely check out the links people have given you above, and buy the Cecelia's Marketplace Gluten Free shopping guide (it's in the newbie thread) - that book has proven to be worth its weight in gold.

 

You may be feeling overwhelmed and frustrated, but I do promise it will get easier. I'm almost 8 weeks in and I'm already doing so much better and my outlook is a happy one.

GottaSki Mentor

Nothing to add to the advice already offered.....just wanted to say:

 

Welcome eBlue and GlutenStinks15 too :)

foam Apprentice

Thank you for the info. If I could have dairy, the gluten free diet would be a lot easier.

 

There's practically no lactose in firm cheese and yoghurt, most people will tolerate those just fine. But it depends on just how much damage is done. If your not struggling to digest foods and not at the leaky gut stage where you need to avoid grains and nuts then I'm thinking cheese and yoghurt will do you no harm.

eblue Apprentice

 

Welcome to the family!  

 

May I direct you to: 

 

(1) this thread for newbies--please read it--lots of good info there (some lady I know wrote it  )

 

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

 

 

 

and  

(2)   I recommend:

 

"Find Me Gluten Free"  for dining out

 

and

 

(3) I also HIGHLY recommend this must-read book:

 

Real Life with Celiac Disease

by Melinda Dennis and Daniel Leffler

 

Best wishes to you! we're here for you!

 

I promise you, soon you will see that all your favorite foods are not gone forever--they are just made with different flours.  We all eat plenty!!

 

I love this website too!!!

 

Open Original Shared Link

 

 

Thank you so much!!

eblue Apprentice

And don't be surprised if you break down and cry at the grocery store a time or two. I think most of us did at the beginning. Not only are you learning a new way to eat, but your body is going through real withdrawal which will make you more emotional than usual. It felt like the end of the world at first, but honestly, not only will you adapt, but you will THRIVE.

 

But if you need to come here and rant and cry and have a total meltdown, feel free. We have all been there, and we will give you the hugs and advice and support that you need.

 

 

OH LOOK!! There's one now!!!  ((((((HUG))))))

Thank you so much! I really appreciate all the support. It means the world!!

txgal748 Apprentice

eblue,

 

it is tough.  I was diagnosed 1 year ago.  There is an app called "Is That Gluten Free?"  It is expensive ($8.99), but I use it several times while grocery shopping.  Eating out is difficult especially when meats are marinated with soy sauce.  I check out restaurants online menus to see if they have gluten-free menus. Some examples are Chili's, Outback, PF Changs, and Pei Wei.  I was slow in changing makeup.  The first was lipstick.  I purchase lipstick from Red Apple Lipstick.  I was used to paying less than $10 for lipstick, so it was difficult to pay $18.  It is worth it though since Red Apple Lipstick is gluten free and paraben free.  You would not believe all of the carcinogens in makeup.  Physicians formula has gluten-free powder foundation and eyeshadows, but not all of their products are gluten-free.  you should also check out the Celiac Diva.

 

Good Luck

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Hmart replied to Hmart's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Is this celiac?

    2. - trents replied to Hmart's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Is this celiac?

    3. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      10

      Help I’m cross contaminating myself,

    4. - DebJ14 replied to Jhona's topic in Introduce Yourself / Share Stuff
      30

      Does anyone here also have Afib

    5. - Hmart posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Is this celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,924
    • Most Online (within 30 mins)
      7,748

    Mckshane
    Newest Member
    Mckshane
    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

    • Hmart
      I was not taking any medications previous to this. I was a healthy 49 yo with some mild stomach discomfort. I noticed the onset of tinnitus earlier this year and I had Covid at the end of June. My first ‘flare-up’ with these symptoms was in August and I was eating gluten like normal. I had another flare-up in September and then got an upper endo at the end of September that showed possible celiac. My blood test came a week later. While I didn’t stop eating gluten before I had the blood test, I had cut back on food and gluten both. I had a flare-up with this symptoms after one week of gluten free but wasn’t being crazy careful. Then I had another flare-up this week. I think it might have been caused by Trader Joe’s baked tofu which I didn’t realize had wheat. But I don’t know if these flare-ups are caused by gluten or if there’s something else going on. I am food journaling and tracking all symptoms. I have lost 7 pounds in the last 10 days. 
    • trents
      Welcome to the forum, @Hmart! There are other medical conditions besides celiac disease that can cause villous atrophy as well as some medications and for some people, the dairy protein casein. So, your question is a valid one. Especially in view of the fact that your antibody testing was negative, though there are also some seronegative celiacs. So, do you get reactions every time you consume gluten? If you were to purposely consume a slice of bread would you be certain to develop the symptoms you describe?
    • klmgarland
      I have a lot to learn!  Thank you
    • DebJ14
      I only went on the multi vitamin AFTER a couple of year of high dose, targeted supplementation resolved most of my deficiencies.  I was on quite a cocktail of vitamins that was changed every 6 months as my deficiencies resolved.  Those that were determined to be genetic are still addressed with specific doses of those vitamins, minerals and amino acids. I have an update on my husband and his A Fib.  He ended up in the hospital in August 2025 when his A Fib would not convert.  He took the maximum dose of Flecainide allowed within a 24 hour period.  It was a nightmare experience!  They took him into the ER immediately.  They put in a line, drew blood, did an EKG and chest Xray all within minutes.  Never saw another human for 6 hours.  Never got any results, but obviously we could see he was still in A fib by watching the monitor.  They have the family sign up for text alerts at the ER desk.  So glad I did.  That is the only way we found out that he was being admitted.  About an hour after that text someone came to take him to his room on an observation floor.  We were there two hours before we saw another human being and believe it or not that was by zoom on the TV in the room.  It was admissions wanting to know his vaccine status and confirming his insurance, which we provided at the ER desk.  They said someone would be in and finally a nurse arrived.  He was told a hospitalist was in charge of his case.  Finally the NP for the hospitalist showed up and my husband literally blew his stack.  He got so angry and yelled at this poor woman, but it was exactly what he needed to convert himself to sinus rhythm while she was there.  They got an EKG machine and confirmed it.  She told him that they wanted to keep him overnight and would do an echo in the morning and they were concerned about a wound on his leg and wanted to do a doppler to make sure he did not have a DVT.  He agreed.  The echo showed everything fine, just as it was at his annual check up in June and there was no DVT.  A cardiologist finally showed up to discharge him and after reviewing his history said the A Fib was due to the Amoxicillan prescribed for his leg wound.  It both triggers A Fib and prevents the Flecainide from working.  His conversion coincided with the last dose of antibiotic getting out of his system.  So, make sure your PCP understands what antibiotics you can or cannot take if susceptible to A Fib.  This cardiologist (not his regular) wanted him on Metoprolol 25 mg and Pradaxa.  My husband told him that his cardiologist axed the idea of a beta blocker because his heart rate is already low.  Sure enough, it dropped to 42 on the Metoprolol and my husband felt horrible.  The pradaxa gave him a full body rash!  He went back to his cardiologist for follow up and his BP was fine and heart rate in the mid 50's.  He also axed the Pradaxa since my husband has low platelets, bruises easily and gets bloody noses just from Fish Oil  He suggested he take Black Cumin Seed Oil for inflammation.  He discovered that by taking the Black Seed oil, he can eat carbs and not go into A Fib, since it does such a good job of reducing inflammation.   Oh and I forgot to say the hospital bill was over $26,000.  Houston Methodist!  
    • Hmart
      The symptoms that led to my diagnosis were stomach pain, diarrhea, nausea, body/nerve tingling and burning and chills. It went away after about four days but led me to a gastro who did an upper endo and found I had marsh 3b. I did the blood test for celiac and it came back negative.  I have gone gluten free. In week 1 I had a flare-up that was similar to my original symptoms. I got more careful/serious. Now at the end of week 2 I had another flare-up. These symptoms seem to get more intense. My questions:  1. How do I know if I have celiac and not something else? 2. Are these symptoms what others experience from gluten?  When I have a flare-up it’s completely debilitating. Can’t sleep, can’t eat, can’t move. Body just shakes. I have lost 10 pounds since going gluten free in the last two weeks.
×
×
  • 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.