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Dealing with Celiac

AmandaWiggin

By AmandaWiggin
in Coping with Celiac Disease

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AmandaWiggin Newbie
AmandaWiggin
Posted

This year has been a very trying year for me. In October 2015 a blood lab was done that had shown me as Celiac positive.... due to having no gastrointestinal issues at the time it was told maybe it was a false positive to go about my life, unless symptoms showed.

then the weekend before Easter 2016 I went to NYC for a show and after a 3 hour drive home... my stomach was in agony.... I tried the first thought to mind was to go to the restroom... at this point I realized I could not go.... within 3 days I went from not being able to pass a bowel movement to not being able to urinate. Scared I went to my doctors who became very concerned and sent me to the hospital.... I was catheterized where they drained 900L of urine. I went through everything under the sun... enemas, magnesium, miralax, suppository and finally a manual disimpaction.    I was tired and embarrassed,but I made it through and they sent me home thinking it wa fixed.  The following day I realized that I still could not go to the restroom, I had no appetite or thirst.... I went back to the hospital on April 1st where they catheterized me once more and pulled another 1,000 L.    They decided to hospitalize me and during the 1-3rd I went through a sigmoidoscopy.... released I had no appetite, but was better and on meds to help my bowels work.   I had to stop them for just a weekend for a test, one day off and I had issues... and once again on April 15th was hospitalized through the 19th where I went through a colonoscopy and endoscopy.    It was found that I had full Celiac, Esophogitis, and chronic gastroenteritis.

 

my Celiac was found to be so bad that I couldn't even handle trace amounts of gluten. Eating out was no more, for just because it said gluten-free didn't mean it was... why? Because it was cooked on a glutened surface and became traced gluten.

 

this has been a very rough time... learning what is and is not gluten and watching my family eat out while I watched. Changing your eating habits after 30 years is not exactly easy.  And due to my Celuac and other chronic health issues it's made blood labs helter skelter, I've lost tons of weight... at current my celiac is in flare. Ow and I've lost 18lbs in 3 weeks not having a real appetite.

 

im sure others can relate and I found this forum thanks to twitter... I hope others can share their stories.  This is a long and not so easy road.

----------------------------------------------

but here's a great little dinner...

gluten free pasta (prefer barilla spaghetti. )

     -cook the pasta, and drain it-

use gluten free teriyaki sauce and pour a little bit in the pasta and mix cook a little (about 2 minutes to let the sauce simmer and mix well)

 

then cook kabasi (spelling?). When it's done cooking, add a little teriyaki to this as well and cook in. 

 

Take me kabasi and pasta and mix!  ?

 

Its tastes fabulous and then cook cook a veggie on the side if you prefer one.

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cyclinglady Grand Master
cyclinglady
Posted

Welcome Amanda!  

Gosh, I can not believe that your doctor did not catch you celiac disease diagnosis!  (Sadly this happens all too often.) Actually, anemia is the most common symptom of celiac disease.    I too, did not have GI issues when I was diagnosed and I had Marsh Stage IIIB villi damage.  

I hope your recovery from your recent glutening is quick!  

 

GFinDC Veteran
GFinDC
Posted

Welcome to the forum Amanda! :)  Boy, that sounds like a pretty rough time you've had.  I hope your doctors referred you to a dietician for info on how to eat gluten-free.  But if they didn't, no biggie, we have lots of experienced people on the forum who can help.  There is a beginners' thread  called Newbie 101 stickied at the top of the 'Coping With" forum.  It might help some.

Your doctor should also test you for vitamin deficiencies, as the can happen due to gut damage.  Some of the vitamins we tend to be low on at first are Vitamin D and the B vitamins.

I suggest that you switch to a simple, un-processed food diet for a few months.  Whole foods and very little processed foods.  Making all your food at home is good way to be sure you know what is in the food you eat.  Meats, veggies, nuts and fruits should be your main foods IMHO.  Most gluten-free processed foods are low in vitamins and high in carbs.  So they aren't a big help when try to rebuild your body.

You might also benefits from pro-biotics.

Pepto Bismol, and Milk of Magnesia are helpful at times, plus some plain old aspirin.  Peppermint tea can  help to get gas out of the stomach.

Try to avoid eating out at restaraunts for a while, and even eating food other people (like family members ) make.  You picked an interesting time to get diagnosed, right before the Thanksgiving holiday!  But there are threads on Thanksgiving ideas in the forum that might help.  You can search for Thanksgiving and find some.  Most meats are gluten-free but do check the label.  The most likely ones to have gluten are pre-spiced meats.  Turkeys sometimes say they have wheat or barley ingredients but often enough it is in a separate gravy packet you can toss out, no problem.

Your symptoms should begin to improve after going gluten-free, but it may take months or years to fully recover,  Our bodies need a lot of protein to heal the damaged tissues, so give it what it needs.

Betaine HCL and digestive enzymes may help also.

Ennis-TX Grand Master
Ennis-TX
Posted

Yeah the constipation threw my doctors off at first too, used to spend 5-10days then have to drink 2-4times the dose of a laxative to have a normal bowl. On the bright side after years of gluten-free gluten has the opposite effect at first then the constipation which clears in a day. Now days I still maintain a 50-80g of fiber (nut, seeds, veggies) a day and regular magnesium supplementation.

I have shared many a horror stories here from my experiences, it helps to come out. I have shared my mental traumas, my family issues and interactions, and issues with people who seem to make a joke out of it and try to poison me (literally we got this guy on camera). And those regrettable issues where you run into a common food that they change the ingredients or prep on. I even started posting on a blog about some random issues I run into and how I deal with my life now days.

We are all different in how our body reacts to gluten and the issues that develop, I am sure you can find someone to give you plenty of pointers with similar issues here, But you should always check with a dietician about developing a diet around your issues. Welcome to the forum and we are here to help.

AmandaWiggin Newbie
AmandaWiggin
Posted
  • Author

I was lucky and had a good GI doctor who referred me to nutrition and I now also use an app on my phone called the gluten free scanner.   

 

Life is certainly not easy, I don't eat out and most times we have to prepare two meals in my house... sadly I don't know where in my fam the celuac came from.... my grandmother has no want in being tested, and my father was adopted.... mom passed away.   So it's a mystery I will never know.  Until I became sick I had no warning signs or issues.... the celiac was found because my RA doctor decided to randomly check by blood.   Since April I have become much more knowledgeable.... but I still go through ups and downs where I start loosing significant amounts of weight but I test negative for anemia.    My Vit D is always low no matter how long I take the 50,000 unit pills I get it up, then doc has me do over the counter 2,000mg a day and within a month it drops to below severe.

Ennis-TX Grand Master
Ennis-TX
Posted

Yeah I was adopted and to this day we can not get my birth mother to release medical records, we found out when I was in my 20s and thought I was literally dying, even running a bucket list. Went from over 200lbs to under 130lbs in a 6 months at 5' 11", I have posted my diet and talked about it pretty much eat like a body builder, whole bunch of fats and protein. Supplements arranged around my needs and eat a balanced meal based around what my body needs, of whole foods. Dealing with some complications with the disease now and seeing doctors but aside from the anemia (Intestinal Bleeding) I am doing pretty good. Started off using a food scanner on my phone with a app, but I am now a master at reading labels and knowing my brands.

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