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Newly Diagnosed

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Posted 20 March 2012 - 12:20 PM

I have been dealing with fatigue, weakness, and some other weird symptoms (dental, vision) for the past several months. I have an 18 month old son and have been encouraged by my family members and friends to believe that I am just a new mom and tired from taking care of an active 1 year old. However, I have felt that there was something more wrong with me and so I started going to see my primary care doctor. To make a long story short, I was referred to a rhuematologist due to a positive antibody test done at my primary care doctor. The rhuematologist did some blood work and I didn't test positive for any of his diseases. However, he did test for celiac because it has similar symptoms to his diseases and the ones I have been displaying. My Gliadin IgG and TTG IgA were high (not to high...one was 23.40 and one was 22.40)and so he has referred me to see a gastroenterologist with the suspicion of celiac disease. He told me to go gluten free and see how I feel at the gastro appointment.

I have been trying to go gluten free and knew it would be hard but man am I overwhelmed. It is very difficult for me to cook food for my son and not cross contaminate into my food. I am wondering if the house should go gluten free (and I am curious if my son has the gene because he has had some bowel issues). I started eating terribly when I got pregnant in 2010 (was a former healthy eater(for the most part) and when I got pregnant I just ate and ate. So ever since then I have been eating pretty badly. Of course my favorite foods are loaded with gluten and prior to a week ago I was eating them without a second thought. I kind of wondered why I wasn't gaining weight (recently-Don't worrry I gained 48 with the pregnancy!) and brought up the concern with family and they dismissed it. I don't seem to have a lot of digestive troubles. My dad has IBS (although I am encouraging him to get tested for celiac) and so I thought I had IBS too. I have bouts here and there where I have diarrhea but just attributed it to IBS. I generally go once a day right when I wake up wih a hurt tummy. After going I feel fine and resume with my day. The past few months though I haven't been motivated and have been tired throughout the day. So naturally I feel like a bad mom not doing more with my son. Now that I know about my labs I am thinking that I need to get this fixed so I can be healthier and happier for all of my family's sake.

I would love suggestions on how to get started. I am generally eating foods that are labeled gluten free, fruits, vegetables, meats. I am trying to cook the recipes I used to make if I can find ones that have all ingredients that are on the gluten safe list. I am paranoid though that I am eating traces of gluten and since I don't have the big stomach issues that other celiac patients do, I don't know if I am doing damage. I did eat down at a church function of the weekend and when I got home, I literally laid on the floor for 1 1/2 hours so tired and feeling like a semi truck had run over me. I don't know if I ate gluten (I tried not to) and didn't realize it or what. I also had an episode today where I was exhausted, felt like falling asleep instantly, and hardly had the energy to lift a finger. In the meantime, my son ran around and made the biggest mess he has ever made and now I have to clean that up on top of feeling bad. What I don't get is if I am eating healthier foods, why do I feel so horrible?? I would appreciate any advice and thanks for reading and listening to a newcomer!
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Posted 20 March 2012 - 12:57 PM

First, if there is more celiac testing to be done, then you should not discontinue gluten until after all that is completed. I have a feeling that others will pipe up about that.

Secondly, I never had intestinal trouble either (although I would consider a daily bout with diarrhea to clearly be intestinal distress, as this is NOT normal). 98% of my gluten intolerance symptoms were neurological in nature, lethargy, brain fog, and that in time led to dizziness, etc., before I started trying to find answers. But even though I tested negative for celiac to blood work and biopsy, a few months later I did test with a exceedingly high antibody count through stool testing. I immediately gave up gluten (and quickly dairy and soy), and the symptoms that had plaqued me for years were eliminated.
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K Wylee

Gluten Intolerant, Positive test, June 2010
Casein sensitivity, Positive test, June 2010
Reactive to soy, most processed foods & preservatives, June 2010



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Posted 20 March 2012 - 01:22 PM

Don't go gluten free until after meeting with the gastro doctor, he will probably want to do a biopsy of the small intestine and once you start eating gluten free the small intestine begins to heal and it may mess up the results.

My celiac was stumbled across by chance. I never had any real severe digestion symptoms, I had fatigue, brain fog, dizziness etc. The doctor ran the antibody test because I was hypothyroid/ hashimoto disease and my meds were not working. I tested positive for the celiac antibodies. No one in my family has celiac (my mom was tested once because of IBS but was negative for celiac). Then before the biopsy I expressed very stressful situations at work and emotional stress and the digestive problems came in full force. Then the biopsy was positive for celiac.

I am new to this (diagnosed a month ago) and reading the posts on this forum, I have noticed people have varying degrees of digestive problems (some none to some severe), that the symptoms vary greatly and mimic so many other diseases.

As for going gluten free, it does take time for the body to heal before seeing the symptoms subside. I am just now feeling better and Saturday will be one month gluten free. Also once you do go gluten free you have to watch for hidden gluten, I never thought it was in a lot of the foods I was eating and it was. I carry a copy of the forbidden ingredient list with me in my purse and I look everything up.
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Positive blood work July 2011
Negative Endoscopy August 2011
Positive Endoscopy February 23, 2012
Celiac Diagnosis February 23, 2012
Gluten Free since February 24, 2012




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Posted 21 March 2012 - 05:58 AM

Your story sounds similar to mine. It started with weird eye issues after the birth of my son 6 years ago. The nausea and tummy issues started a couple years later. Actually I had some tummy issues years ago and was told it was IBS and to eat more fiber so of course I upped my whole wheat intake. YIKES!

From what I'm gathering it's just going to take awhile for our bodies to adjust to the new diet. I hope you have more energy soon! Hang in there. I'm still in the overwhelmed stage as well but it's getting better and I'm find my gluten free diet more satisfying. At first I was starving constantly and felt very deprived.
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Bubba's Mom

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Posted 21 March 2012 - 06:58 AM

You may want to call the GI's office that you were referred to? If they want to do an endoscope (which is VERY likely) you need to continue to eat gluten until the tests are finished. If they tell you to go gluten-free be sure to question them, because it DOES affect the results.

Once you go gluten-free it will take time to heal, and restore any nutrients you may be low on. It would be a good idea to ask the GI to run a vitamin/mineral panel for you so you know if you need to supplement anything.
Being so tired could be a low B12..or iron. It's best to get them checked.

Once you go gluten-free, be sure to change your toothbrush, wooden cutting board, wooden spoons, colander, toaster, can opener(or clean yours very well). Get rid of any scratched non-stick cookware and anything porous like plastic storage containers you may have used with gluten items. If you will have gluten foods in your house, you must keep your gluten-free items seperate from items used with gluten. In some cases that means having two of each type of item.

If it were me..I'd take the whole household gluten-free. It's sO much easier!
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Posted 21 March 2012 - 07:56 AM

You may have to further tweak your gluten free diet, once testing is completed. You may need to switch what you are eating at certain meals, for example, like adding more protein and fat at breakfast, perhaps even a vegetable, and less carbohydrate. Some of us are rather insulin resistant and have slow thyroids but won't test out (yet) as deficient enough to do anything about it. Loading up on cereals and regular gluten free breads just slays us, but we can function better on the higher protein seeds and nut meals and maybe smaller servings of brown rice and potato if they are balanced out with a protein, fat, and veggie.

Having the house go gluten free is optimal, my spouse volunteered to do this after seeing me get wiped out once too often by cross contamination mistakes, we also have a dog whom is very, very allergic to wheat, and a horse with a soy/rye/barley/bermuda grass problem, so all the pets are wheat/gluten free to avoid cross contaminating them. I have accidentally cc'd my dog by giving him a piece of gluten free toast I had made from gluten free flours that turns out must have been cc'd - talk about bad reactions :ph34r: his are worse than mine, and guilt. Can't stop the dogs and cats from sharing all the water containers inside and out, and spreading it that way, so it was buh- bye to gluten, oats (can be cc'd) and soy in pet foods around here.
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