Test Results

[SLLRunner]

I asked my doctor to take the full celiac panel and told her if insurance does not cover it I would be glad to pay for it.  I don't think what she ordered is the full panel, and the blood tests I have look negative to me:

This was after about 6-8 weeks of ingesting gluten again, after being gluten free for about a month (and feeling much better).  

She also tested for thryoid, which look suspect for hyperthyroidism to me:

After posting these results online, the doctor nor her assistant called or emailed to discuss anything with me, even to tell me everything is fine, or let's watch the thyroid, or anything at all. Silence from her as usual.

I have recently changed firms, which offers 100% paid health insurance (vision, medical, dental) and was provided an array of choices. I decided not to go with this health insurance any longer and researched to find a GI specialist who is also a PCP and celiac savvy, and he's in my area and accepting new patients.

Those two tests are negative, but the digestive symptoms continue daily, along with brain fog, fatigue, aching  and irritability.  Even if I don't have celiac, there is definitely something wrong with my body.

 

[squirmingitch]

Nope, you were not given the full celiac panel. Keep eating the gluten & go see the new GI. Gosh, I'm so sorry this is happening to you! Grrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!

Also it doesn't look like she tested you for being IgA deficient which would be a big OOPS!

[Gemini]

They also did not test you completely for thyroid disease, either.  You have to do a full panel and not just rely on the TSH.  I will say that your numbers for the TSH look good and do not indicate hyperthyroidism.  Most really knowledgeable doctors who specialize in thyroid treatment like to see TSH in the 1.00-2.5 range, which yours is.  Are you having any hyper symptoms? Normal can vary with everyone but that is the updated range for TSH.  The ranges the lab used are old and outdated and too wide of a window.......but many labs still use them.  Hard to teach an old dog new tricks!

 

[cyclinglady]

Ugh!  You have Kaiser? (Guessing from your cut and paste from their website.)   Your PCP is only authorized to order the TTG tests.  Only an GI can order the complete panel (this is all about reducing their expenses, but I can not blame them when so many patients abuse the system).  Can you ask for a GI referral?  Or did I get this right...you have new insurance or are you paying cash  for a second opinion?  For future, always read the lab requests.  I hover over the computer to see what's entered and I ask for copies of everything before I leave.

Gemini is right.  Your doctor knows nothing about thyroid issues.  Even my GP will run everything but the antibodies (since they are always high anyway.....) when I ask.  

Email the doctor back and ask her why she did not order the complete panel (she did in her mind) when you asked for it.  Insist on a GI referral!!!  In writing!  

[cyclinglady]

Oh, I would be happy with those TSH results, but those do not tell the entire story......

[SLLRunner]

Thanks, everyone.

I have 15 days before my new insurance is effective, and I signed up with Sutter because I found a GI who specializes in celiac who is also a PCP and taking new patients. In fact, I put him down as my new PCP.  Once this is effective, I will get copies of all my records and have them sent to Sutter. 

@cyclinglady, I would love to call the Dr. up, or email her, but she's very good at not returning calls or emailing, or even keeping me apprised of test results. Yep, it's Kaiser. I'm done with them.

@squirmingitch, I didn't think the full panel was done. As cylinglady said, she probably thought she ordered the full panel.

@Gemini, that's good to know the range is normal. Mine has spiked a lot though, but perhaps that is normal? I will ask for a full panel on that once I transfer to the new doctor. 

[cyclinglady]

I am not a thyroid expert, but your TSH seems pretty stable.  It would be nice to have an entire panel done to rule out autoimmune thyroiditis, but I suppose that depends on your symptoms.  When hyper, I was unable to sleep, nervous, weak muscles, muscles surrounding my eyes hurting, shakey.   When hypo, I needed lots of coffee and an afternoon nap.  I was exhausted!  I also would lose hair from my eyebrows.  What caused my doctor to check it some 20 years ago?  My thyroid was enlarged and had nodules.  Would you believe after going gluten free and healing from celiac disease, it is normal and the nodules are gone after 20 years!  

I'm not trying to slam Kaiser.  They are rated at the top per Consumer Reports.  My parents love Kaiser!  They are keeping my Aunt alive (that's another story)!  The negative is that they are the insurance and health care provider.  That's doesn't always mix so well.   I am sorry that your had what sounds like a "dud" doctor.  

Keep eating gluten until you get to your new doctor.  

[SLLRunner]

 

I am not a thyroid expert, but your TSH seems pretty stable.  It would be nice to have an entire panel done to rule out autoimmune thyroiditis, but I suppose that depends on your symptoms.  When hyper, I was unable to sleep, nervous, weak muscles, muscles surrounding my eyes hurting, shakey.   When hypo, I needed lots of coffee and an afternoon nap.  I was exhausted!  I also would lose hair from my eyebrows.  What caused my doctor to check it some 20 years ago?  My thyroid was enlarged and had nodules.  Would you believe after going gluten free and healing from celiac disease, it is normal and the nodules are gone after 20 years!  

I'm not trying to slam Kaiser.  They are rated at the top per Consumer Reports.  My parents love Kaiser!  They are keeping my Aunt alive (that's another story)!  The negative is that they are the insurance and health care provider.  That's doesn't always mix so well.   I am sorry that your had what sounds like a "dud" doctor.  

Keep eating gluten until you get to your new doctor.  

On the thyroid- you're probably right about it being normal. I have trouble sleeping, but that could be because of anything.

Kaiser is good at some things, but other things not so good.  I've only had this doctor at Kaiser for maybe six or so months because my old doctor moved to a different practice area. He was very communicative but not celiac savvy either.

[frieze]

what bothers me about this, is that basically your doc lied by omission.  you made it clear that you would pay, and she did not order the tests anyway.

[SLLRunner]

 

what bothers me about this, is that basically your doc lied by omission.  you made it clear that you would pay, and she did not order the tests anyway.

This seems a bit harsh. Not being celiac savvy, I believe the she thought she ordered them all.

[frieze]

 

This seems a bit harsh. Not being celiac savvy, I believe the she thought she ordered them all.

then she is uneducated, and i am glad you have gone on to someone else

[SLLRunner]

 

then she is uneducated, and i am glad you have gone on to someone else

That's right....not celiac educated.

[SLLRunner]

Today I indeed found out my old doctor is not educated in celiac because she emailed me and told me my test results came back negative, bu if a gluten free diet makes me feel better then I should pursue it. Since I have changed insurance and will be getting a new PCP next month, I have decided not to respond.  But, if I did choose to respond, I would say, "but, Doctor, you did not take the full celiac panel, so how can you be sure that I'm negative?" 

Frustrating. 

[cyclinglady]

You know, you can register a complaint with Kaiser.  It might help someone else.  

[SLLRunner]

 

You know, you can register a complaint with Kaiser.  It might help someone else.  

Excellent idea. That I will pursue.

[icelandgirl]

Hi SLLRunner,

As others have said, TSH tells only a part of the thyroid story.  My mom's was always in the normal range, but when she finally pushed for further testing she had really high antibodies.  Since thyroid issues so often go hand in hand with celiac, it would probably be good to get a full thyroid panel to include: TSH, Free T3, Free T4, TPOAb and TgAb.  It might be a good idea to take a list of these tests as well as the celiac tests to your new doctor so that you can specifically request the tests you need.  Good luck!

[SLLRunner]

 

Hi SLLRunner,

As others have said, TSH tells only a part of the thyroid story.  My mom's was always in the normal range, but when she finally pushed for further testing she had really high antibodies.  Since thyroid issues so often go hand in hand with celiac, it would probably be good to get a full thyroid panel to include: TSH, Free T3, Free T4, TPOAb and TgAb.  It might be a good idea to take a list of these tests as well as the celiac tests to your new doctor so that you can specifically request the tests you need.  Good luck!

I have requested my entire medical file, which I will pick up on Monday.  Once I get my new doctor and make an appointment (June 1 is start date for medical), I will have hard copies of my entire file sent over to him/her. I will then get a referral to the GI I have been researching, who is listed as a PCP (that is a mistake) and very knowledgeable about celiac.

Great idea the entire thyroid panel. I have never had an entire one done before.  Also a great idea to take the list of tests to the doctor so we are on the same page.

[SLLRunner]

Update:

I am about at my wit's end. I won't be able to see my new doctor until July 17 to get a referral to a GI doctor, so I continue to eat gluten and the effects continue to worsen. Today my boss, whom I have been working with for 12 years, and I had a meeting where he said he's noticed a change in many things, such as speech, not articulating well, forgetfulness, and other things that are affecting my work product. I finally told him I know there is something wrong with me medically and I've been trying to get to the doctor to no avail.

I recall those four weeks early in the year when I tried out gluten free and was beginning to feel much better- more present, more sharp, and then went back on gluten in preparation for the blood test.  I just don't think I can do this gluten thing any longer and am thinking of going cold-turkey gluten free.  I'm 54 years old, am beginning not to care about a diagnosis because I just want to feel better and be able to do what I need to do. Because of how I felt going off of gluten earlier in the year, and eating gluten free when I was on the McDougall plan years ago, and how I feel while doing this gluten challenge, I am pretty convinced that my issue is gluten. 

Any words of encouragement would be welcome.  If you've done gluten free and never looked back, tell me about it. 

[squirmingitch]

I went gluten free & never looked back! I have dh, the celiac rash. That makes it pretty darn easy to go gluten-free the moment you figure it out. I was not about to continue eating gluten for even one more day just so the medical establishment would be satisfied in my dx. There was not a moment of doubt in my mind that I had dh & therefore celiac. As it turns out, weirder than weirder than weird and the odds I can't even begin to imagine.... I have since, by sheer accident, had 2 docs officially dx me. Is that crazy or what??!! I did not go in asking for a dx nor even hoping for one. Frankly, I just plain didn't care what they thought. The medical community has failed me numerous times throughout my life so I don't have the highest regard for them.

You are 54, I was 54 when I figured mine out. I have no kids so did not need to consider them in my decision not to go for an official dx. My parents had already passed away so that was not an issue. My brother had passed away so that was not an issue either. I did contact my nephew & tell him to let my sister know so she could get tested. So I have done my duty by her & she's an adult and a nurse & can make her own decisions.

I do urge people to go for an official dx whenever possible, especially when they have kids or other 1st degree family members. If it's doable for them I think they should make a good effort at it. Also, there are certain people who express they don't think they can stick to the diet without the official dx. I think those people should pursue a dx with all their might. I have never had the slightest problem sticking religiously to gluten free eating. I have never doubted myself.

I know you have tired HARD! Super, super HARD. I commend you for your dogged pursuit. I would not, could not blame you for giving it all up & just going gluten free this instant. That is a choice only you can make but I fully support whatever decision you make.

[SLLRunner]

Thank you, @squirmingitch. As luck would have it I got my appointment moved to July 5. Thank God!  

[squirmingitch]

Woooooooooo Hoooooooooooo!!!!!!!!!!! Hooray for that!

Allright then, you just have to hang in there another week.

[icelandgirl]

Hang in there SLLRUNNER...it is hard and frustrating.  Good job getting that appointment moved up.  I've done too...I've called daily looking for cancellations.  I can also remember counting down the days until my appointment.  ((((Hugs)))) and please let us know how it goes.

[SLLRunner]

Thank you, guys. I will let you know how it goes sometime after 8 a.m. on Tuesday morning. 

[cyclinglady]

I hope it goes well!  

As far as going gluten free without a diagnosis?  Not me, but my hubby.  He has been gluten-free for 15 years.  He refuses to do a challenge.  He knows gluten makes him sick.  Wish his doctors had been celiac-savvy back then.  He went gluten-free per the advice of two medical doctors.  To be honest, we need him to be well.  We are self-employed and could not handle a challenge.  

[SLLRunner]

Cycling lady, thanks so much! Counting down the days until Tuesday at 8:00 a.m.