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

I Need Help


dawnskaggs

Recommended Posts

dawnskaggs Newbie

Hello My name is Dawn

I am a 30yo mother of two young girls and a nurse

In 2005 I had a total colectomy and my entire colon was removed.

Since that time I have had some huge weight loss and weight gain periods

Right now I am in the middle of a weight gain

I can do nothing to lose any weight

I go to the gym and exercise

In the mean time i was diagnosed with fibromyalgia and started taking lyrica

I went to the Dr last week due to stomach upset after eating everytime, fatigue, weight gain, pain and headaches

He diagnosed me with celiac and took some blood test.

He told me to start on a gluten free diet

Ok there is my problem

I am in school for my advanced nursing degree and am raising my girls

I wake up in the morning to poptarts and cereal, in the afternoon a tuna sandwich and the dinner with the family full of gluten

So I have no idea what to do

Any help will do

Dawn


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



Celiac.com Sponsor (A8-M):



ShayFL Enthusiast

First Dawn....Welcome. :)

Secondly, how did he Dx Celiac without the results of the blood tests. And here is the thing, if the blood comes back POS he will want you to get a biopsy. You MUST keep eating gluten until ALL testing is done. He may not require a biopsy for a Dx, but you should at least wait until the blood work comes in. If it is POS and he doesnt want a biopsy, start your gluten-free diet then. If it comes back POS and he does want a biopsy, wait till the day after the biopsy to start gluten-free.

If ALL comes back NEG, you can still try the diet to see if you get results. Many in here came back NEG on tests but had a dramatic POS response to the diet (me included).

So right now, hang tight and read through these forums and LEARN LEARN LEARN. There are MANY threads that have menu ideas for children and adults. And you can ask specific questions ANYTIME.

*lee-lee* Enthusiast

hi Dawn and welcome to our world!! this board is a great resource. read what you can and ask lots of questions...i'm sure you'll get some wonderful advise.

i'm curious about the doctor your saw...many doctors won't diagnose celiac without first performing a biopsy and certainly not before the blood work results come back...you'll need to continue consuming gluten until all tests are done or they won't be accurate.

but once you go gluten-free...

personally, i found it helpful to read about the disease. Celiac Disease - A Hidden Epidemic by Dr. Peter Green is a great starter book. i read it when i was awaiting my biopsy and found it very helpful. i also have Living Gluten-Free for Dummies. it's your typical Dummies book but worth checking out.

as for eating gluten-free...it's a lifestyle change. i've found it best to plan my week on Sundays. i do my shopping and spend some time cooking ahead of time so it's easier to re-heat and throw together meals if i'm too busy.

Rice Chex is now gluten-free so you can enjoy that for breakfast with some fruit, you can convert your tuna sandwiches to tuna wraps using corn tortillas and then get creative with dinners! you can also consider converting your household to gluten-free that way you don't have to make separate meals for yourself and your girls. (it's healthier anyway so no harm done!)

i'm in love with my crockpot these days, thanks to the "CrockPot Lady"...check out her website: Open Original Shared Link

you may want to stick to naturally gluten-free foods for a while until your body heals. shop the perimeter of the grocery store and steer clear of gluten-free breads and such for a while. some people also have issues with dairy and/or soy after going gluten-free.

it's daunting and scary at first but i promise, it will get easier!

Cherry Tart Apprentice

Hi Dawn,

Not to worry, once you get the hang of it - the gluten-free lifestyle becomes second nature.

Here are some quick breakfast ideas: Cereal (Rice Chex is my fav - Cocoa/Fruity Pebbles are great for a sugar fix), PB&J on rice cakes, hard boiled eggs and cheese slices, Trader Joe's frozen gluten-free banana waffles or rice pancakes (they also have a mix for both), BumbleBars (I like chocolate and almond chai), apple slices and peanut butter, Trader Joes organic yogurts, egg-cheese-salsa breakfast wraps in corn tortillas. I don't know where you live but, there are some very good markets when it comes to gluten-free: Sprouts, Trader Joe's, Henry's, Wild Oats, Whole Foods (most have gluten-free shopping lists online).

As mentioned by another poster, check out the blog for the gal that does gluten-free crockpot recipes that are pretty simple and tasty: Open Original Shared Link

Things always seem dismal after being newly diagnosed, don't worry, things will get better :)

missy'smom Collaborator

Welcome. The gluten-free diet may require some adjustment in lifestyle but any investment you make in it is an important investment in your health. This is a disease that is very manageable and we don't have to take meds and put up with their side effects! Planning and preparing ahead helps. We can still have(our versions of) pasta, bread, cereal and many of the familiar things. Switching family meals over to simple, natural foods and having everyone eat these naturally gluten-free foods is a good idea. You will learn how to prepare many of your old family recipes again, with gluten-free ingredients without sacfificing flavor. Enlist the help of your kids with kitchen chores if they are old enough and train in steps if they are not quite. It is not a burden to them, it is a good opportunity to teach important life skills and the investment of a little extra time and patience initially will pay off in the long run!

happygirl Collaborator

Join a local Celiac support group.

Ask your doctor for a referral to a dietitian who is experienced with Celiac.

Learn how to read food labels and which companies make reading labels easier.

https://www.celiac.com/categories/Safe-Glut...3B-Ingredients/

Open Original Shared Link and Open Original Shared Link

Newly diagnosed: Open Original Shared Link

Read, read, read.

other good resources besides this forum and its owner, celiac.com:

www.celiacdiseasecenter.columbia.edu

www.celiaccentral.org

www.celiac.org

www.celiacdisease.net

www.gluten.net

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,311
    • Most Online (within 30 mins)
      7,748

    SWilson
    Newest Member
    SWilson
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @Cathijean90! I went 13 years from the first laboratory evidence of celiac disease onset before I was diagnosed. But there were symptoms of celiac disease many years before that like a lot of gas. The first laboratory evidence was a rejected Red Cross blood donation because of elevated liver enzymes. They assume you have hepatitis if your liver enzymes are elevated. But I was checked for all varieties of hepatitis and that wasn't it. Liver enzymes continued to slowly creep up for another 13 years and my PCP tested me for a lot of stuff and it was all negative. He ran out of ideas. By that time, iron stores were dropping as was albumin and total protein. Finally, I took it upon myself to schedule an appointment with a GI doc and the first thing he did was test me for celiac disease. I was positive of course. After three months of gluten free eating the liver enzymes were back in normal range. That was back in about 1992. Your story and mine are more typical than not. I think the average time to diagnosis from the onset of symptoms and initial investigation into causes for symptom is about 10 years. Things are improving as there is more general awareness in the medical community about celiac disease than there used to be years ago. The risk of small bowel lymphoma in the celiac population is 4x that of the general population. That's the bad news is.  The good news is, it's still pretty rare as a whole. Yes, absolutely! You can expect substantial healing even after all these years if you begin to observe a strict gluten free diet. Take heart! But I have one question. What exactly did the paperwork from 15 years ago say about your having celiac disease? Was it a test result? Was it an official diagnosis? Can you share the specifics please? If you have any celiac blood antibody test results could you post them, along with the reference ranges for each test? Did you have an endoscopy/biopsy to confirm the blood test results?
    • Cathijean90
      I’ve just learned that I had been diagnosed with celiac and didn’t even know. I found it on paperwork from 15 years ago. No idea how this was missed by every doctor I’ve seen after the fact. I’m sitting here in tears because I have really awful symptoms that have been pushed off for years onto other medical conditions. My teeth are now ruined from vomiting, I have horrible rashes on my hands, I’ve lost a lot of weight, I’m always in pain, I haven’t had a period in about 8-9 months. I’m so scared. I have children and I saw it can cause cancer, infertility, heart and liver problems😭 I’ve been in my room crying for the last 20minutes praying. This going untreated for so long has me feeling like I’m ruined and it’s going to take me away from my babies. I found this site googling and I don’t know really what has me posting this besides wanting to hear from others that went a long time with symptoms but still didn’t know to quit gluten. I’m quitting today, I won’t touch gluten ever again and I’m making an appointment somewhere to get checked for everything that could be damaged. Is this an automatic sentence for cancer and heart/liver damage after all these symptoms and years? Is there still a good chance that quitting gluten and being proactive from here on out that I’ll be okay? That I could still heal myself and possibly have more children? Has anyone had it left untreated for this amount of time and not had cancer, heart, fertility issues or liver problems that couldn’t be fixed? I’m sure I sound insane but my anxiety is through the roof. I don’t wanna die 😭 I don’t want something taking me from my babies. I’d gladly take anyone’s advice or hear your story of how long you had it before being diagnosed and if you’re still okay? 
    • trents
      Genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out and also to establish the potential to develop celiac disease. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% actually develop it. To develop celiac disease when you have the genetic potential also requires some kind of trigger to turn the latent genes "on", as it were. The trigger can be a lot of things and is the big mystery component of the celiac disease puzzle at this point in time with regard to the state of our knowledge.  Your IGA serum score would seem to indicate you are not IGA deficient and your tTG-IGA score looks to be in the normal range but in the future please include the reference ranges for negative vs. positive because different labs used different reference ranges. There is no industry standard.
    • Scott Adams
      Since nearly 40% of the population have the genes for celiac disease, but only ~1% end up getting it, a genetic test will only tell you that it is possible that you could one day get celiac disease, it would not be able to tell whether you currently have it or not.
    • KDeL
      so much to it.  the genetic testing will help if i don’t have it right? If theres no gene found then I definitely don’t have celiac?  I guess genetic testing, plus ruling out h.pylori, plus gluten challenge will be a good way to confirm yes or no for celiac. 
×
×
  • Create New...