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Mcfmommy

Test Results Negative? Can't Read Them, Depressed!

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Last week I got my blood drawn to test for gluten antibodies.  I got the results sent to my account today and I can't believe they are negative!  I've been off gluten the past week (starting AFTER my tests) with a huge reduction in symptoms.  I'm actually disappointed the tests came back this way.  Here are the numbers.  Can you help me make sense of this?  I had the following symptoms (almost all starting in 2004) and really truly believed they were from celiac, now I don't know what to think:

 

acid reflux

anxiety

PMDD

Brachial Neuritis

Reactive ariway disease

Migraines/headaches

CHRONIC FATIGUE

Vitamin D Deficient (level 9 with 31 being the lowest in the range)

Hypothyroidism diagnosed 7/20/13

Glaucoma diagnosed 9/19/13

WEIGHT GAIN

insomnia

alternating constipation/diarrhea

 

Along with the celiac test the blood draw revealed that my thyroid is actually worse since I started synthroid in July!!!  How did it get worse?!?!?!

 

Celiac Test Results:

 

Transglutaminase Iga value 3 range <20

Iga Blood value 116 range 78-391

Gliadin Ab IgA value 4 range <20

Gliadin Ab igG 3 range <20

 

thyroid was TSH value 9.19 range 0.4 - 5.5 on July 18th 2013

thyroid was TSH value 11.25 same range as of Septmeber 26th 2013

My Vitamin D improved from level 9.5 to 30.7 since I started the supplement, which is better but still low.

 

I actually had a sleep study done Saturday and I now have sleep apnea and restless leg syndrome to add to my list of symptoms.  If it's not celiac why am I falling apart????  I am 38 years old.  Was healthy until 2004 when the anxiety, acid reflux, PMDD, Brachial neuritis, weight gain, and Reactive Airway disease started.  I have had migraines and headaches since I was 8 years old.  I was thin until 2004 when I started gaining A LOT of weight!  I mean A LOT!  I have been exhausted since I was a teenager.  Squamous cel carcinoma (skin cancer) and sun allergy diagnosed at age 25'ish. 

 

I'm so depressed this is not celiac.  I was hoping to have something to tie all these symptoms together so I can get better.  But IN THE PAST 6 MONTHS ALONE I HAVE DEVELOPED: hypothyroid, Vit D Defeiciency, Glaucoma, Sleep apnea, restless leg syndrome, and fatty liver.  At this pace things don't look good for me at all.  I am also getting a few skin biopsies this week that are suspected skin cancer.

 

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Ask why your TSH is high and going up.  I think that can mean a thyroid issue.  Why isn't the doctor addressing that?  A poorly functioning thyroid can cause lots of trouble.

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You need more thyroid medication!  Did they test just for TSH or did they do an antibodies test on your thyroid as well?  This will determine if you have autoimmune thyroiditis -- not just hypothyroidism.   Your doctor should be testing your thyroid every six weeks to make sure the dosage is correct until you have stable lab results.     Obviously, it's not!  You can also dd some research on thyroid disease at a site called about.com.  Mary Shomon does a great job of explaining it and how to cope.  I'm on Armour thyroid which has worked well for me.  So, you'll need to figure out if Synthroid is doing the job for you.  

 

So, first take care of the thyroid.  One step at a time.  Being that out of range (should be between 1 and 3) will make you feel really sick!  Getting that on track will probably reduce or eliminate many of your symptoms.  

 

Other hormones may be out of whack too (perimenopause).  

 

Then you can address some of your "celiac like" symptoms.  I found my food allergies and intolerances at the same time my thyroid issues came up back in 1997.  My celiac disease didn't kick in until the last year or so. 

 

Hang in there!  

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I second what has been suggested. Hashimoto's can certainly cause your levels to go wacky. There's a simple blood test for the antibodies. And yes, when your thyroid is off, even just a little, you can feel horrible in a variety of ways.

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I made an appt with an endo for this wednesday.  My regular PCP just raised the synthroid from 50 to 88 and wanted to recheck TSH in December.  That just doesn't seem curious enough to me.  I want to know what my T3 and T4 levels are and what is causing my thyroid to suddenly have these struggles?  Hashimoto's?  Is there a reason my pcp wouldn't run the test for the antibodies without my specifically asking?  I mean I had to ask for the celiac test and the initial thyroid test in July.  I feel like I am doing all the diagnosing and differential diagnosing here based on info I get from this site and elsewhere on the internet.  Am I making too big a deal out of thyroid issues or is my doc under concerned? 

 

Now it's beginning to look like everything that I thought pointed to celiac is now pointing to thyroid???  Uggh  My breathing has gotten worse, as in I feel like I can't accept a full breath.  I'm scared.  6 diagnosis in 6 weeks.  What's next?

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And that's why it's time to forgo your pcp and get some specialists involved. When I first developed asthma and celiac symptoms my pcp just kept prescribing antiobotics. After the 4th visit I asked to be referred to a pulmonary specialist. From there a GI specialist. Even now that I have osteopenia my pcp is not worried about it, yet my GI doctor is worried and wants it monitored.

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Ouch!   :unsure:  I'm glad you are getting your thyroid problems re-assessed, your TSH was waaaay higher than it should be. As a very general rule (that is not true of everyone) it is often found that those with thyroid problems tend to feel their best when their TSH is near a 1... 11 is crazy! I personally don't feel well when my TSH is ABOVE a 1; still have all the symptoms - and thyroiditis symptoms are almost the same as my celiac symptoms minus the bloat and stomach pain.  

 

You should also get your Free T4 and Free T3 checked; they should be in the 50-75% range of your lab's normal reference range. If they are in the bottom half, it may not be good enough for you - it wasn't for me. Don't check T4 and T3 (or total T3 and total T4) as that doesn't give a good idea as to what hormones are available in your body..

 

TPO Ab can tell you if it is Hashi's but I personally don't trust it completely. I have been hypo for over a decade and my TPO Ab has never tested as elevated yet my thyroid barely works. I have two other autoimmune diseases, and a lumpy thyroid, so I'm betting it's Hashis but the TPO Ab doesn't support that guess.

 

Gluten intolerance is found in higher numbers in people with thyroiditis. It is possible that you have non-celiac gluten intolerance (NCGI) that aggravates your thyroiditis. It could be something to consider once you increases your thyroid meds to adequate levels or add some T3 to your meds.

 

If you want to do more (and better) celiac disease testing, you could request tTG IgG, DGP IgA and DGP IgG, and EMA IgA. You had the tTG IgA test done which is a good one but it can miss 5-25% of celiacs. The anti-gliadin antibody tests (AGA IgA and AGA IgG) are older tests that aren't as reliable or sensitive as the newer tests. There is more info on pages 10-12 of this report: http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

And (((HUGS))) to you. I understand. I was 38 when I had the doctor order my celiac disease and thyroid tests. I self diagnosed and he confirmed it. It then took another year of fighting and doctor changing to get the thyroid meds that worked for me (Synthroid didn't cut it for me).  Hang in there.

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Thank you so much for the encouragement. My TSH was 1.19 in 2009. I developed different neurological symptoms and pain and weakness in neck that radiated down my right arm (brachial neuritits) so I was prescribed corticosteroids and Vicodin several times a year since 2010. I started gaining tons of weight. And now I have all these new problems which could actually be a result of the corticosteroids (glaucoma and thyroid issues could be related to the steroids, but no one is testing to find out why or where the problems come from). Doc tested again in July TSH 9 again in September TSH 11.25. So I'm panicked that the Meds are causing more problems and before just upping the dose i'd like to get the full panel done. I don't understand why I have to fight and beg for this testing. Shouldn't that be best practice? Don't they make money on these tests? I can't figure out where the resistance is coming from.

What kind of doctor handles your thyroid and why do they fight about which Meds work best?

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What kind of doctor handles your thyroid and why do they fight about which Meds work best?

 

I had to leave my family doctor and see an orthomolecular doctor who was willing to prescribe natural dessiccated thyroid. I was on Synthroid for about 8 months, slowly upping my doses over time until it was up to 138mcg and my TSH was around a 3 (in the middle of our TSH normal range. My doctor declared me normal and that my unchanged hypothyroid symptoms were a coincidence and must be caused by something else... didn't offer what the "something else" could be though. Doctors are counselled not to give T3 or NDT up here (Alberta) so I had to find an "alternative" doctor and I pay extra every time I see him.... I feel better than I have in a decade though.   :D

 

Lori is completely correct, steroids will produce a false negative in celiac disease testing...

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I had to leave my family doctor and see an orthomolecular doctor who was willing to prescribe natural dessiccated thyroid. I was on Synthroid for about 8 months, slowly upping my doses over time until it was up to 138mcg and my TSH was around a 3 (in the middle of our TSH normal range. My doctor declared me normal and that my unchanged hypothyroid symptoms were a coincidence and must be caused by something else... didn't offer what the "something else" could be though. Doctors are counselled not to give T3 or NDT up here (Alberta) so I had to find an "alternative" doctor and I pay extra every time I see him.... I feel better than I have in a decade though. :D

Lori is completely correct, steroids will produce a false negative in celiac disease testing...

Yep! Happened to me. Tested negative while on prednisone only to be diagnosed 2 months later ;-)

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I was on the steroids in July but didn't get tested for celiac until September. I think I finished 7/23 and was tested for celiac 9/26. Is that enough time?

A lot of you have thyroid issues on top of the celiac, did you have difficulty breathing and rapid heart rate when on synthroid? My resting heart rate was 115 today and bp 142/89. I feel like the heart slows down sometimes but the breathing takes concentration. It no longer feels like a subconscious thing. This started about 2 to 3 weeks after I started synthroid and has been going on for a little more than 2 weeks. I just don't want to find out I have heart problems now.

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Two months off steroids.... I would guess that would be adequate but I've never researched that before. I have read that oral prednisone can linger for up to a month whereas the injectable form can be in your system for 3 months. Was it prednisone?

 

I had an odd heart rate only when I took too much natural desiccated thyroid. My free T3 was above the normal range at that time and I felt jittery and my heart "fluttering" on occasion. My heart rate and blood pressure has gone up while on NDT (and on florinef and cortef) but it is more in the middle of normal rather than on the low end now (ex. HR 71, BP 108/70).

 

The fast heart rate could be a hyper thyroid sign. It could be possible that you are on too much synthroid (but I highly doubt it with a TSH of 11) or you could be swinging between hyper and hypo states, which can happen in the earlier years of hashimotos.  Perhaps Synthroid doen't agree with you and a different brand might work better. I found the dyes in one of the syntroid amounts made my lips go numb and swell a bit - I know it's not the same but perhaps something in the meds are affecting you.

 

I hope you find answers. I imagine what you are going through is scary.

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