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I Need Help

dawnskaggs

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dawnskaggs Newbie
dawnskaggs
Posted

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
ShayFL
Posted

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
*lee-lee*
Posted

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
Cherry Tart
Posted

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
missy'smom
Posted

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
happygirl
Posted

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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    • rei.b
      High DGP-A with normal IGA

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      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
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      High DGP-A with normal IGA

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      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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