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I Need Help


dawnskaggs

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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


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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

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    • daniellelawson2011
      Thank you for the welcome and reply. The first test was tissue transglutaminase IGA and it was normal. The second test just simply says IGA and it was 638. You definitely answered my question, it sounds like im negative for celiac since the 1st test was normal, and that another condition has caused the abnormal result of the IGA. That's exactly what I was wondering. Im almost positive I have MS and I've read results are higher like that with early onset. Or it could be IBS. Hopefully the visit with the neurologist will give me even more answers and point to a final diagnosis. I really appreciate you taking the time to reply and for helping. Thank you so much!
    • trents
      Welcome to the forum, @daniellelawson2011! First, we need to deal with terminology here. When you refer to the "ttg" test I take that to mean the ttg-iga. And when you refer to the "iga" test I take that to mean total iga since the magnitude of the score would suggest that. Total iga is not a test for celiac disease per se. It is run in order to check for iga deficiency. If you are iga deficient, then the ttg-iga and other iga tests that are specific for celiac disease will be abnormally low and this would potentially produce false negatives. You are not iga deficient but, rather, your total iga is abnormally high. This can suggest underlying health conditions, some of them can be serious in nature.  https://labs.selfdecode.com/blog/high-iga/ "High IgA usually points to chronic infections or inflammation, though many disorders can raise its levels. High IgA does not cause symptoms. People show symptoms from their underlying health problem." One thing I might add and that is you must have been eating normal amounts of gluten for weeks/months prior to the blood draw for antibody testing. Testing while on a gluten free or gluten reduced diet will not yield valid results. Also, here is a primer outlining the various antibody tests that can be ordered to check for celiac disease:  
    • daniellelawson2011
      After struggling with many different symptoms for years with no diagnosis, I decided to do my own research and I stumbled upon an article about celiac disease. I asked my PCP to order a ttg and iga. The results: the iga was high at 638. The ttg was negative. Of course I will discuss with my doctor, but i would like to hear from people that have went through the process of diagnosis to maybe give me some insight on what this means and where to go from here. Also of note, i had a brain mri which showed white lesions which arent typical at 44 years old. I have many MS symptoms. I go to the neurologist on Tuesday, but just curious if anyone knows if there is a correlation between iga and MS. I appreciate any help! Thanks!
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    • nanny marley
      Thankyou so much for your reply I decided to skip the senna has I've already had very loose stools last few days I've cut my portions down on the low fiber diet too and drinking lots of liquid has I just thought it would be wise to listen to myself too I've probably already done wat the senna would of done myself naturally by drinking clear apple juice which if not on the diet I would have to avoid anyways has I don't tolerate many fruit juices so I'm sure I've done the right thing I did try to contact the department on my letter but weirdly enough it was ringing but then after a while saying wrong number 🤷 but again I'm positive I've done the right thing I'm going to take today very lightly too with low portions and more liquids so yes thankyou for that advise I am very nervous but I have had time to think and read other peoples experiences and not all are bad there is some good advise and reassuring information from people who do these all the time so I'm trying my best to be positive so I can at least settle my mind knowing im doing this to help my own health has this year has been a rollercoaster for me cutting out gluten and lactose was a good idea but I still get flare ups and other symptoms so it definitely is worth a check like you said it was the calprotein that prompted the doctor to refer me again thankyou for your reply it's means a lot for someone to take the time to listen and respond and give uplifting advise  especially to me just now has I'm a bundle of nerves inside getting closer to tomorrow prep so thankyou for that 🙏
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