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This Sounds Crazy I Know :(

SleepyBunny

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SleepyBunny Apprentice
SleepyBunny
Posted

Well I just got back from the dr and he said based on my blood work I don't have Celiac. I'm actually pretty upset by this. Even after reading tons of stuff on this site saying this could happen I still feel like I was punched in the gut when he told me that. I've felt like crap for as long as I can remember. Sleeping a lot, acne, "c", brain fog like nobody's business, recently migraines, dizzy spells, depression when I was younger, getting cold easily (sometimes my fingernails actually turn blue!) actually fainted at work at the beginning of the year (don't know if that's celiac related). I've always been so frustrated with the way I feel. Never knowing why and wondering if this was something I was just gonna have to live with. Then this dr dangles this little celiac carrot in front of me then takes it away. I know I sound crazy for sounding like I wanted a disease. But it just seems like people probably thought I was crazy of lazy and I thought I'll actually have proof that I had no control over it. I just don't know what to think of all of this. I know I could still have an "allergy" or "intolerance" to gluten but try telling that to people. Oh I have an allergy. <_< With the way my family is they'll either make fun of me, think I'm over reacting, or tell me to get over it. :( I've been eating gluten free for 3 weeks and my brain fog has improved greatly, stomach problems are still touch and go, I feel like my skin is better. I just wanted a solid dx ya know? He told me my Vitamin D levels were really low and my thyroid was a little low and my platelets were a little low also. I'll put my results. Maybe some of you can tell me what you think. :unsure: Thinking of going and downing a loaf of bread :blink:

Soooo even though I "technically" don't have celiac will you guys still be my friend? :unsure::( Thank you for listening

Tissue Transglutaminase Antibody, IGA: <3

Immunoglobulin A: 214

Gliadin Antibody IGA: <3

Vitamin D: 11

Plateletes: 124.0

TSH: 5.290

Thyroxine (T4) Free: 0.970

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pricklypear1971 Community Regular
pricklypear1971
Posted

Did y'all talk about thyroid meds??? Did he test for Hashimotos?

As you know, bloodwork is famous for being wrong. Why don't you do a stool test from Enterolab?

Takala Enthusiast
Takala
Posted

This is more common than you think.

Continue to eat the way that makes you feel not sick.

SleepyBunny Apprentice
SleepyBunny
Posted
  • Author

No he didn't test me for Hashimotos. But he said that I guess sometimes after taking vitamin d for a while my thyroid could improve. He said if I start taking thyroid meds that my thyroid will expect it and not do it's job. So I told him I want to try taking the vitamin d for a couple of months and see if that helps. If not then I guess I'll try thyroid meds. I've read a little about Enterolabs but wasn't sure what test I should do and the prices are kinda high so I'd have to save up for a bit.

I guess I'll keep eating this way anyway. It's just frustrating cos I'm getting to where I'm afraid to eat stuff cos these food companies are given so many loopholes. :ph34r: I would feel good for a few days then feel so so. I didn't know if it was from withdrawal or eating gluten by accident. When the dr told me to try gluten free he told me to try to avoid casein also. So I haven't really been eating dairy either. Every once and I'll eat a gluten free tv dinner with cheese and seem to do ok. I don't want to push it though.

Thank you guys for responding. I really appreciate it. Please let me know of anymore thoughts you have.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

It's nobody's business whether you tested negative or not. If eating gluten-free makes you feel better just tell people your dr prescribed a strict gluten-free diet and leave it at that. I am diagnosed via elimination diet only because I cut it out of my diet before I knew that the tests would be inaccurate unless I ate gluten for 3 months before testing. I can't eat gluten again to do the testing because it makes me violently ill. I don't TELL people all that however. I tell people I have celiac and additional food allergies (which I do have food allergies). If they ask me about testing I assume that are asking because they might suspect they have celiac too and I tell them there are blood tests and endscopy with biopsies and direct them to this board to find out more information.

mommida Enthusiast
mommida
Posted

You can always stay here, we don't kick anyone out of the tribe.

Is that your Holland Lop in the pic?

pricklypear1971 Community Regular
pricklypear1971
Posted

Yes, most hypos are helped by certain supplements - vit D among them. But most need t4/t3 supplements - especially if they are suffering (and you are). And I'd bet a ton of $ that its more than just vit D. It is ALWAYS more than one thing. That is the only "truth" I've found.

If gluten-free makes you feel better, go gluten-free. I'd also demand a Hashis test.

As you can read from the boards, people are told they aren't gluten intolerant at all based on a blood test. One that is infamously false negative. Doctors notoriously underestimate thyroid blood work - people are frequently told their thyroid is working because the lab says the range is "normal", or its barely high. Mine was barely high and I was miserable (over 5.5). As it turns out, gluten was probably the main culprit but thyroid meds immediately knocked me out of my funk.

Eventually, I'd get genetic testing or Enterolab. Enterolab is probably the best one-shot deal unless your doc will order the genetic test - LabCorp has a good series. Enterolab will tell you about more different genes (including the ones for gluten sensitivity). LabCorp tells you in depth about the celiac marker genes.

Hey, do what you need to do to be happy and healthy. Its your life, not your doctor's.

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Skylark Collaborator
Skylark
Posted

We'll still be your friend. B) I never even had a celiac test because I figured it out on my own before the big 2006 article that made doctors aware of how common celiac is.

Stick to the gluten-free diet. Sometimes the blood tests are wrong, but other times gluten intolerance looks just like celiac disease (and it might even be an early stage of it). Your thyroid tests are definitely low and I bet you feel lousy. Gluten-free can help a pooped-out thyroid, especially once you start absorbing selenium.

Stick to your guns and don't let your family push you into eating food that makes your stomach hurt!

pain*in*my*gut Apprentice
pain*in*my*gut
Posted

Well I just got back from the dr and he said based on my blood work I don't have Celiac. I'm actually pretty upset by this. Even after reading tons of stuff on this site saying this could happen I still feel like I was punched in the gut when he told me that. I've felt like crap for as long as I can remember. Sleeping a lot, acne, "c", brain fog like nobody's business, recently migraines, dizzy spells, depression when I was younger, getting cold easily (sometimes my fingernails actually turn blue!) actually fainted at work at the beginning of the year (don't know if that's celiac related). I've always been so frustrated with the way I feel. Never knowing why and wondering if this was something I was just gonna have to live with. Then this dr dangles this little celiac carrot in front of me then takes it away. I know I sound crazy for sounding like I wanted a disease. But it just seems like people probably thought I was crazy of lazy and I thought I'll actually have proof that I had no control over it. I just don't know what to think of all of this. I know I could still have an "allergy" or "intolerance" to gluten but try telling that to people. Oh I have an allergy. <_< With the way my family is they'll either make fun of me, think I'm over reacting, or tell me to get over it. :( I've been eating gluten free for 3 weeks and my brain fog has improved greatly, stomach problems are still touch and go, I feel like my skin is better. I just wanted a solid dx ya know? He told me my Vitamin D levels were really low and my thyroid was a little low and my platelets were a little low also. I'll put my results. Maybe some of you can tell me what you think. :unsure: Thinking of going and downing a loaf of bread :blink:

Soooo even though I "technically" don't have celiac will you guys still be my friend? :unsure::( Thank you for listening

Tissue Transglutaminase Antibody, IGA: <3

Immunoglobulin A: 214

Gliadin Antibody IGA: <3

Vitamin D: 11

Plateletes: 124.0

TSH: 5.290

Thyroxine (T4) Free: 0.970

Everybody has given you great advice, I don't have anything to add other that I can totally relate to wanting a solid dx. You are NOT crazy (cuz if you are, then so are the rest of us who are trying to figure out what the heck is wrong)! :rolleyes:

Bubba's Mom Enthusiast
Bubba's Mom
Posted

My blood tests came back negative, but the GI specialist had ordered up the endoscope the same day she ordered the blood tests. If we had stopped looking after just a blood test I wouldn't be DXed. The scope showed severe damage and gave me my answers.

If you feel better on a gluten-free diet you don't have to explain or answer to anyone about it! Do what makes you feel better.

SleepyBunny Apprentice
SleepyBunny
Posted
  • Author

You guys are so nice :) I feel like the little kid getting picked on at school and yall are by brothers and sisters that protect me lol I'm a nerd forgive me lol ;)

Yeah I'm going to wait a few months and do the vitamin d thing. I don't want to have to take yet another med if this helps ya know? He wanted me on 8000 units of D3 I believe a day. I got some drops at Sun Harvest (Sprouts now). He also told me to go outside for 20 minutes a day. So today I sat outside and took my vitamin d. :D I bet the sun put on sunglasses when I came out. :lol: I'm as pale as they get so I might get me a little tan ;) I'm a night person so I guess I shouldn't be surprised at the test results. When I go back to be tested again I'll ask for the Hashimoto test. My mom has the whole thyroid thing and told me I think she had part of it removed before I was born. I'm still going to do the Celiac diet cos I do feel better. Maybe the Vitamin D and hopefully improvement with my thyroid will improve my tummy situation. Cos my brain fog has been a lot better. Still kinda sleepin a lot on my days off. Hopefully the vitamin d will help with that too. When I told my mom the results and that I wanted to keep on the diet she said well maybe you can do it half the time. :huh: I give up lol I'll prolly try to eat some gluten one day just to be sure. But I'm pretty sure it affects me too.

And guess what peoples I lost 4 lbs in 3 weeks according to the dr's scale :D I actually like the scale at my dr's office now lol :lol::rolleyes: I've been trying to lose weight since the end of last year and lost about 30lbs. But kinda started giving up cos I felt lousy all the time and kept getting c all the time. Who wants to exercise when you feel 8 months pregnant? :huh: So if this diet helps me feel better and helps me lose weight what's the harm right? :)

P.S.- So do you guys think all my low results are connected? I mean even the platelet thing? He said the vitamin d and thyroid can but as a whole are they all connected? Sorry I'm new to all of this. :blink:

krystynycole Contributor
krystynycole
Posted

I am not officially diagonised either. My tests were negative, but being gluten-free made me feel so much better that I never looked back and I am still here biggrin.gif

nora-n Rookie
nora-n
Posted

my blood tests were negative too, but I do not have the main genes and then the tests usually do not work because they are just for gut damage, not the rest of the damage to the rest of the body.

I have DH (skin version of celiac) and gluten ataxia too.

I got the gene test from enterolab (sent it from Europe and that cost more than the test itself) and I am glad I did, as it explained to me why my blood tests were negative. DQ1 are known to be extremely sensitive to gluten and have mostly neuro symptoms.

I ahve hashimotos too.

Good idea to try vitamin D first, but I recommend you start on thyroid hormones after a couple of months. Taking thyroid meds lowers TSH and that in turn lowers the thyroid antibodies that attack and destroy the thyroid and make you feel awful. I guess vitamin D will only cause a slight drop in TSH.

The reason your tests may be negative, might be that you can have patchy celiac, and the blood tests are at least 50% negative with patchy celiac. The tests are developed to catch fully blown celiac mostly.

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      Contact them.
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