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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Frustrated - Tired Of Being Dismissed. Waiting On Biopsy Results.
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1 post in this topic

A little history...I am 39 years old. I've had belly issues for as long as I can remember. I was diagnosed with irritable bowel syndrome in my early 20's.

My symptoms:

Nausea (I don't always feel awful, but I never feel good. This is daily. Something I unfortunately considered normal for me. It's all I've known for over 20-25 years).

Abdominal cramping

Constipation and diarrhea (less C and more D)

Stool contains a lot of mucous, floats (fatty stool?)

Frequent headaches

Fatigue/sleepiness

Numb/tingly hands and feet (most intense after eating)

Brain fog (feels like "medicine head")

I had my gallbladder removed three years ago. I have another autoimmune disorder that caused six miscarriages (I now am the mom to three nine year olds as a result of INVITRO. They administered IVIG and heparin to sustain pregnancy).

My numb/tingly hands started just a few months before I had my gallbladder removed. I saw a doctor at that time to discuss the numbness (I had an MRI to rule out MS and stroke, bloodwork and EKG to rule out heart issues). When that came out all normal, he said he didn't know what else could be causing it. He said the fatigue was due to being the mom of three kids. This kind of ticked me off. I get that it's tiring, but there is a difference between being exhausted from life, and SLEEPY all the time. My headaches he attributed to three children as well. Sigh. My constipation and diarrhea due to ibs, and for my nausea, suggested I give up dairy to see if I was possibly lactose intolerant. I gave it up for about two weeks. No change. Perhaps I didn't give it long enough.

I was so happy to have MS ruled out, I let it go. I blame myself for not being proactive in getting to the bottom of what was wrong with me. Nausea and these weird numb hands and feet were my new normal. I'm not the person I used to be. I used to be fun, cheerful. I feel like I'm just this lump of grumpy because I never feel good. I guess I could add irritability as a symptom, but I feel of course I'm irritable, I feel like crap!

Zoom to now. I've gained 30 pounds the past two years. I can't lose weight. No matter what I eat, how much I exercise, the scale doesn't move. If it does, it moves up. I was playing around online seeing what I could do, and why I wasn't losing. It kept leading me to gluten and celiac. I read the symptoms...nausea, headaches, etc are symptoms to almost all ailments it seems. Then I got to the numbness and miscarriages...and a lightbulb went off.

I saw a new doc :). She said it could be thyroid, vitamin B deficiency, or celiac. Thyroid and VB came back normal. She did one blood test for celiac (iGa?). It came back negative, but she said it is not uncommon for false negatives, so she recommend I go in for a biopsy to confirm or rule it out. I had my biopsy this morning. I'm frustrated because the GI doc seemed totally aggravated that I was having a biopsy done. He said that since my bloodwork came back negative, I do NOT have celiac. He said the numbness has nothing to do with celiac...unless of course I was malnourished, which I didn't appear to be (yes, I am overweight), and my bloodwork didn't reflect that.

He said when it comes back negative (not if, when), we can meet again to look into getting meds to help with my IBS. Good news is that even though he gave me attitude, he did perform the biopsy. I should get results early next week. I told him that if it turns out negative, I still plan to eliminate gluten to see if that helps rid me of my symptoms. He looked at me like I was out of my kind and said dryly, "if you don't have celiac, you don't have problems with gluten." Fine. Whatever. I didn't argue with him. What does it hurt to try? I'm happy I got my biopsy. I'm hoping it gives me answers.

If any of this sounds like your experience. If you could give me any advice. I really appreciate it!

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    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
    • Weird Reaction
      Hi Richie,  Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.
    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
    • Will my doctor test me? So many symptoms...
      Welcome, @iwillmoveamountain! Of course you are not wrong to pursue getting testing for celiac. My advice is to drop that doctor and find a new one, preferably one who is celiac savvy, and who will listen to you and test you for the disease.  
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