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I'm So Frustrated!

glutenfreemamax2

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glutenfreemamax2 Enthusiast
glutenfreemamax2
Posted

I've been called a hypochondriac, OCD, even crazy. I thought that I FINALLY figued out what was making me so miserable my whole life. I was diagnosed with IBS a while ago, and assumed that was the problem. There is a mucus in my movements, but it's been there for as long as i remember. I finally had the nerve to ask fr the blood work, and it came back negitive. SO now, again, everyone in my family thinks i was over reacting, and that I was making up symptoms. They told me to eat gluten yesterday. I did, and now my stomach hurts. It normally takes 2-3 days before I see any problems with my stomach. Today I my stomach hurts.

Can anyone offer me any advice? I'm so frustrated. Am I making all this up in my head?!? WHy can't we figure out what is going on?!?

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adab8ca Enthusiast
adab8ca
Posted

I've been called a hypochondriac, OCD, even crazy. I thought that I FINALLY figued out what was making me so miserable my whole life. I was diagnosed with IBS a while ago, and assumed that was the problem. There is a mucus in my movements, but it's been there for as long as i remember. I finally had the nerve to ask fr the blood work, and it came back negitive. SO now, again, everyone in my family thinks i was over reacting, and that I was making up symptoms. They told me to eat gluten yesterday. I did, and now my stomach hurts. It normally takes 2-3 days before I see any problems with my stomach. Today I my stomach hurts.

Can anyone offer me any advice? I'm so frustrated. Am I making all this up in my head?!? WHy can't we figure out what is going on?!?

First, I am so sorry that you are feeling so poorly and seem to be getting little support. I don't think you are crazy. It sounds like you have gone off gluten and felt better in the past?

A couple of things to think about. If you were off gluten for a time, you may have healed enough that the tests came back negative. as well, these tests can be sometime falsely negative. You may be gluten intolerant and not done enough damage yet. You may have a wheat or gluten or some other intolerance that is NOT celiac and therefore, the usual tests are not conclusive.

My symptoms were not even GI, only neurological and my Dr. orginally said it was "Stress" "anxiety" but I pushed and pushed as I knew something was wrong and a neurologist ordered a TON of autoimmune tests which showed me off the charts with Celiac antibodies. Even then, the GI and neuro didn't believe it but the biopsy proved it. If you can, keep pushing and if that is not an option, try going gluten free and see what happens.

Good luck!

cassP Contributor
cassP
Posted

so you went gluten free 10/1 ?? and then had blood test 10/16 ?? im not sure if 2 weeks is enough to clear out enough antibodies to give a false negative... but you never know... i think the statistic for false negatives among celiacs is 20% !!!!!! i had 2 Celiac panels done in 2008.. and at first glance (which apparently is all the attention my GP & GI gave it)- then one would see me as negative.

they suggested i go gluten free anyways. i kept cheating because i kind of needed the diagnosis to get serious. i had to study my tests myself and learn about them, and revisit my docs to go over them- took me 2 years from those tests to actually come to a diagnosis and get serious

if you feel comfortable posting your results here- we all would be interesting in dissecting them.

Skylark Collaborator
Skylark
Posted

I've been called a hypochondriac, OCD, even crazy. I thought that I FINALLY figued out what was making me so miserable my whole life. I was diagnosed with IBS a while ago, and assumed that was the problem. There is a mucus in my movements, but it's been there for as long as i remember. I finally had the nerve to ask fr the blood work, and it came back negitive. SO now, again, everyone in my family thinks i was over reacting, and that I was making up symptoms. They told me to eat gluten yesterday. I did, and now my stomach hurts. It normally takes 2-3 days before I see any problems with my stomach. Today I my stomach hurts.

Can anyone offer me any advice? I'm so frustrated. Am I making all this up in my head?!? WHy can't we figure out what is going on?!?

If a food makes you sick, don't eat it! There is a such thing as gluten intolerance, where you come up normal on the tests but still get sick from gluten. That delayed reaction is very typical of an intolerance too.

glutenfreemamax2 Enthusiast
glutenfreemamax2
Posted
  • Author

If a food makes you sick, don't eat it! There is a such thing as gluten intolerance, where you come up normal on the tests but still get sick from gluten. That delayed reaction is very typical of an intolerance too.

I'm trying hard not to eat it. I'm doing a lot in my power to stay away. I'm still getting cc at home.

I am going to ask for a copy of my labs at my next appointment, and I will post them. I go back on 11/11.

So let me get this straight:

If I had an intolerance, i would have this delayed reaction. Here is an example: Tuesday when I got back from vacation, I was depressed that my test results were negitive. I say what the heck, and I ate 3 cookies (NOT gluten-free) After about 30 minutes, my stomach hurt bad. Not like I was going to puke, just pain. It's hurt on and off. It still hurts today, and it is 2 days later. I was able to go to the bathroom today. It still hurts, but starting to feel better. I have reflux as well. When I'm strict about the gluten, the reflux goes away, and my stomach dosen't hurt.

If I had an actual allergy, what would be different? Sometimes when I eat it, my lips go numb, and my tounge swells. Sometime my throat gets tight, but it's not every time(that I notice) The other thing that was brought to my attention, is that when I was strict about not eating any gluten, the feeling went away. When I ate some again, I noticed it more, because I had had it for so long, it went away, and then it came back. Does that make sense?

Skylark Collaborator
Skylark
Posted

Sounds like you have all sorts of reasons to avoid wheat!

Have you talked to an allergist? Wheat allergies are thought to be a childhood thing but there are a lot of us on the board who can tell you otherwise. :lol: The numb lips and tongue swelling sounds like true allergy, especially if it starts within a few minutes of when you eat. So is the throat getting tight. Allergic reactions also come and go the way you are describing. With the throat tight, you might want to ask your doctor about whether there is any concern of a reaction that could make it hard to breathe.

Food allergies can also give you stomach aches and make you feel generally miserable. Allergic eosinophilic esophagitis can mimic reflux too, although some celiacs get reflux from gluten. It's also possible you have some of the intolerance folks around here suffer from that's causing the slow GI reactions.

Gormur Newbie
Gormur
Posted

If a food makes you sick, don't eat it! There is a such thing as gluten intolerance, where you come up normal on the tests but still get sick from gluten. That delayed reaction is very typical of an intolerance too.

Yea i haven't been diagnosed celiac, but the odds are i have it. One of my cousins has it & my mom has a low gluten tolerance. From the symptoms described, it seems everyone is somewhat different..

Consuming gluten (in any form) makes me feel drunk! Not in a 'good' way, mind you.. but dizzy, confused, restless & angry. My illness got so bad at one point i ended up with a candida infection & became very sick.. I stopped eating gluten for a month then started eating it again.. now it's been a few years since then & it's caught up with me again.. it feels like i have arthritis (i'm 27), i have constant migraines, ADD, depression, 'chronic' bloating, & passing blood in stool (which passes every 6-7 days, if i'm lucky)

so i got off the gluten again 2+ weeks ago.. the blood thing has me worried enough to stay off it now. i'm concerned about the damage i've done to my body

it takes time to get it out of your system. have patience. drink water. it gets easier. the cravings go away after a few weeks & you should start to feel a lot better within a month +...

Good luck,

-G

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