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Negative Tests- Good News, But Sooo Frustrating!
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3 posts in this topic

Hi,

 

So, my testing is not going well (or going well, depending how you look at it lol).  I've had a colonoscpy, endoscopy and celiac blood work (although the GI doc only ran one blood test): ....all negative.  I am staying on a gluten diet, despite my symptoms, as my Rheumatologist may want to send me to another GI for a second opinion.

 

Continuing Symptoms:

- insomnia- most night I can't get to sleep until 1-4 am

- morning fatigue, even on night where I can fall asleep around midnight and get 7 hours sleep, I'm a zombie until 2-3 pm, then I wake up and feel more normal

- BM's- not regular, foul smelling, sticky, sometimes yellow.  Yesterday was almost grey like and looks like clay! ewww

- swollen eyelids in the morning, sometimes with hives

- headaches, occasional migraine with flashing lights when I close my eyes

- gas, bloating, cramping- although this doesn't always happen

 

Before I started my testing, I was gluten free for a long time, with the occasional cheat meal.  Then I got really sick....constant diarrhea for like 8 weeks, going to the bathroom 12-15 times a day.  I was totally drained, lost about 20 lbs.  During that 8 weeks, prior to testing, I was only able to eat rice and oatmeal.  I did a three week gluten challenge before my endoscopy.  But when the blood test was done, I was more or less Gluten free.  I am starting to think that wasn't enough of a gluten challenge?

 

Hopefully my RA doc will have a good plan, I am not sure how long I can continue eating gluten, but I really do want answers :(

 

 

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I'm sorry that you don't have a clear answer! Could you stay on gluten long enough to get the rest of the blood work run? It's best to run all of the blood tests, if only one is run, it may miss celiac.

 

If the doctor refused to order it, you can order it through a private lab and self pay. 

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Thanks Ruth, yes I am staying on gluten until I can see who the RA doc's will be sending me to for a second look.  I will request the full blood work at that time, I just hope its not months from now that I can get an appt :(

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    • Thanks, I'll check that out. I may have to apply for my own Medicare card in order to get any kind of coeliac-testing done beyond the screen (see above post.)  No, nobody has even mentioned it. I'm unsure if my doctor knows that I do not need to use my hands to vomit, or if she knows about the involuntary vomiting.  I have a part time job at McDonald's and make around $150 per week, which is how I afford to smoke. Mostly, I spend my money on (generally gluten-containing) binge food and cigarettes. I did attempt to start saving money, but then my shifts were cut at work - which meant I had more time to study, but no money, which was kind of pointless. It's complicated. Here in Australia, cigarettes are $25 per pack. These aren't fancy cigarettes either, just your run-of-the-mill Marlboro 20s. Thanks for caring. I am trying to stop I've had the vomiting thing all my life, way before I started smoking. And no, I'm not sure. I know he had an endoscopy and the flattened villi, but I'm not sure if he got a blood test - I assume he would have done, don;t know if it was the full panel. Supposedly he has this FODMAP thing, which I'll admit that I know next to nothing about. Interestingly, people who have to follow low-FODMAP or no-FODMAP diets can't eat gluten either, so there's that. 
    • Would a coeliac screen be the same as a test for antibodies, then? I have no idea why it was even included in my list of tests. It could be my brother, or my symptoms, or both - regardless, I can't say I know too much about the testing.  It's possible that my brother has coeliac disease, I really do worry about it sometimes. He was told to follow a strict low-FODMAP diet by his doctor, and eventually my parents stopped caring. Occasionally they will remind him not to eat things like pasta, greasy foods, etc. because of his condition, but by and large they don't care. He basically just eats whatever he wants. I'm not sure if it affects him or not. However, he isn't shorter than other family members - my dad is 183cm, and my brother is 178cm at the age of 14. Our mother is 173cm.  I do think I have bad digestion, yes. I get gassy and very bloated often, as well as constipated phases (and then following that, diarrhea phases.)  I have tried to ask my mum to call the doctor to get the tests done, but I'm hesitant to mention anything to do with gluten as I know they won't believe me, solely because a good friend of mine has celiac disease. I know they'll think I'm doing it for attention, or to be trendy, when in actual fact I'm just tired of being sick and having no explanation for it other than diet. I'm positive it's not dairy, as I was vegan for a couple of months at one stage. When I went back to eating animal products, I had no issues whatsoever. 
    • He had the IgG ELISA done as well as other blood panels, fecal and saliva tests. He is on an elimination diet right now where foods that score above 0.2 are eliminated for 2-6 months depending on the score, then added back slowly after the detox period.  I am aware that there is a lot of controversy over the IgG, and I'm not here to go into that issue, but I can say with certainty that eliminating the additional foods he reacted to has seen a huge reduction in the symptoms that persisted after cutting gluten and dairy. We will be attempting to add rice back in around October, and see how he does but until then I still need a solution for a baking mix.  I tried to wing it a bit with pumpkin bread today and my attempt was okay but not great. The loaf sank a bit and was overly chewy.  So, to my original question....recipes?
    • Ask the doctor's office!  But usually you can eat right after if you feel like it.  But ask them!  Some of them will try to give you crackers, so you may want to bring some gluten-free applesauce or Rice Chex
    • I'm wondering if he doesn't have an oat problem. He was only dx'd several months ago and really shouldn't use oats for a year after dx. Just thinking out loud. I too am wondering how the rice was picked out of all those other flours to be determined to be affecting him.
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