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frantichope

Not Sure What To Do!

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Hi! I'm thinking I might be Celiac but I'm not sure what to do. Let me give you some background that might explain my confusion and my hesitation to call the doctor...

About 5 years ago, I started working at my current job - a desk job at a chemical company. They do blood tests when you start, though, because they want a baseline just in case you ever have anything weird happen.

I expected to hear, "You really need to lose weight!" - but I didn't. Instead, I heard, "Did you know you're severely anemic?" I didn't - but at the time, my "time of the month" was pretty severe so when I went to my new doctor (since I had just gotten insurance) he and I agreed that was probably the problem. I took the iron pills and my numbers improved...slightly. Even now, when the "time of the month" issue is under control and they're very light, I get dangerously low numbers if I don't take pills. He's even threatened iron infusions!

Fast-forward about two years. I started having problems with my Achilles tendon in my right foot. Chronic tendinitis and a bone spur. I eventually had surgery. I had problems with the left one after that, but we managed to avoid surgery.

About a year ago I was diagnosed with Type 2 Diabetes. Ick. I was 28 and had been fat all my life and it runs in my family, but it still REALLY isn't fun. About that same time, I asked my doctor to check for hypothyroid. I had a lot of the symptoms (which are actually a lot like anemia symptoms). I also asked for a B12 test. The T4 test was in the middle of the "approved range" but the TSH was borderline so he put me on Synthroid. I feel okay on it, but I wouldn't say the fatigue is gone. I thought I'd feel a lot better and I don't. The B12 test was near the middle of the range, but closer to the bottom (458 on a range of 211-946).

So I have the anemia. I have the tingling fingers and toes (which could be diabetic induced neuropathy but considering I've been diabetic about a year (and we test often, so it's unlikely I was diabetic more than 6 months before it was diagnosed) and it takes 15-20 years to develop neuropathy, I don't think that's it. I have pretty constant diarrhea, though I guess at this point I'm just sort of...used to it (if that makes sense). I get constipated from time to time, though - I don't seem to have a middle ground! I'm tired all the time. I have sleep apnea and getting started on CPAP helped a lot at first but now I find myself almost falling asleep at my desk again!

So I guess the question I have is - do I call my doctor? I just feel like I call him all the time with all these things I think are wrong with me and I'm never right (except for the diabetes - I asked for the blood sugar meter before the test came back - I think I knew). The B12 was fine. The thyroid test was almost fine and I had to plead for the thyroid medicine - and then had to own up it barely made a dent.

I DO have a GI doctor - I have bad acid reflux and so I could always call his office but I think he'll just tell me to get the blood tests from my GP.

I just don't want to be a whiner or a hypocondriac but I really think this might be something I have. I thought about just going gluten-free but then if they DO try the test, there's a much bigger chance of a false negative.

So do I call the GP? The GI doctor? Does it sound like I'm creating something that isn't there in my head?

Any advice would be FABULOUS! :)

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If you can make a direct appointment with the GI doctor you should do so. When you make the appointment ask for a celiac panel, they can call it in or give you a lab slip, so that way you have the test results in when you go to the appointment. Your regular doctor can also order the tests but if the GI wants to do an endo for diagnosis you would need to see the GI doc anyway.

Do not go gluten light or gluten free until after all your testing is done. As soon as testing is finished give the diet a good strict try. You don't need to wait for the results first. Do keep in mind that tests have a rather high rate of false negatives so in the long run it is your response to the diet that matters the most.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Or you can just decide that you never want the test, and stop eating gluten. You should know fairly quickly if it helps, and if it doesn't you can still pursue other testing.


"But then, in all honesty, if scientists don't play god, who will?"

- James Watson

My sources are unreliable, but their information is fascinating.

- Ashleigh Brilliant

Leap, and the net will appear.

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I called the GI doctor and they told me - as I feared they would - that I need to call my GP first and get the blood tests and if the blood tests come back positive, then they'll see me and do a biopsy if that's what I want.

I'm going to call the GP - they don't open for another hour or so - and see if I can get the test done today.

Even if the tests come back negative, I may still try gluten-free. Can't hurt, right? I must admit, though, it would be nice to have an actual diagnosis. I'm not sure why - I think it's a mental thing!

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Be prepared to fight to get the test panel done. If you are overweight an uneducated doctor may say you can't have celiac of gluten intolerance. I ran into this problem myself and it's part of the reason why I'm self-diagnosed. My GI told me I just need to lose weight and gave me pamplets on eating healthy that included advice about eating "whole wheat" bread. Funny thing is I got sicker from eating more whole wheat pasta and whole wheat bread. I hope your doctor is more understanding and orders the test for you. You have a lot of conditions that can be associated with celiac or gluten intolerance.


A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

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Well, I finally got in touch with my GP. I normally like the guy - don't get me wrong - but he wants me to come in before I get the blood test done.

Because that makes NO SENSE WHATSOEVER. So my guess is I'm possibly going to get the, "you're fat so you can't possibly be celiac," talk though he's normally pretty awesome about not bringing up my weight.

It might also be that my insurance won't cover the tests without an appointment first.

In any case, I already had one scheduled with him for next Tuesday, so I'll just OD on gluten until then. ;)

I'll let you know how it turns out!

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