Beginner With Questions

[Syracusegirl1999]

Okay, so I have not had any type of testing, but I am looking for wisdom of those who have come before me and know a bit more than do I.

 

So, here's the nitty gritty "boring" details - 36 yr old female, was born 2.5 months early but no health issues from birth. I was diagnosed with a 7mm Chiari Malformation Type 1 in 2010 (my boss called me a freak), had severe vertigo and no diagnosis as to why other than "retaining fluid, so no extra salt/soda," had at one point a leopard-spotted rash on my neck (Summer 2009), have had an un-diagnosed version of allergic contact dermatitis off/on since college - on hands, wrists and ankles (so itchy that scratch until the skin is damages dand peels off, then the skin turns numb), diagnosed with hypoglycemia in college, vitamin D deficiency diagnosed in 2012, according to allergist no known allergies, chronic sinus infections for 14+ years (had endoscopic sinus surgery in 2011), always tired, always easily bruised, geographic tongue, occasional itchy scalp that I can scratch till it bleeds/scabs, sinuses congested after eating grains.

 

I know, that's a lot, but that's the background for the next part and my questions. 

 

Lately I've noticed that I go through alternating C and D episodes, increase in flatulence, feeling of fullness/bloating, my anxiety/depression has returned, inability to lose weight and I had an episode in the restroom at work where I thought I might either pass out or puke.

 

So, here are my questions:

1) Might the hypoglycemia/geographic tongue/sinus infections all be good indicators of either gluten intolerance or gluten sensitivity?

2) Could the dermatitis issue I've had for about 18 years be another symptom?

3) The vertigo I've experienced off/on also for years has been attributed to salt and water retention - I'm wondering whether it might be a combo salt/gluten issue?

 

I have not gone off gluten, and am seeing a doctor this Friday (Oct. 18). I am going to ask my doctor to update my bloodwork, and in addition to checking Vitamin D, I'm going to ask for the tests linked to gluten as well as thyroid levels. 

 

I'm wondering as to whether these "diagnoses" might instead be symptoms and linked to either gluten intolerance or sensitivity. I know I may be reaching, and that this is really asking for your educated guesses on all of this.

 

If you have read all this, I sincerely thank you, because it hasn't been easy for me to write all this and put it out there.

[kareng]

Make sure you get the total serum IGA with the TTG IGA and the TTG IGG. There is some evidence that people with low IGA have more sinus infections. If you have low IGA, any test for it could be low.

Here is a list of the basic symptoms and it contains a link to more symptoms

Open Original Shared Link

[Syracusegirl1999]

Thank you!

[nvsmom]

So, here are my questions:

1) Might the hypoglycemia/geographic tongue/sinus infections all be good indicators of either gluten intolerance or gluten sensitivity?

 

 

I think so. I used to get one to two sinus infections per year and haven't had one since going gluten-free. Hypoglycemia was an issue for me before as well, and it is greatly improved now.

 

 

2) Could the dermatitis issue I've had for about 18 years be another symptom?

 

 

Yes. If you want to check if that is DH, have the skin BESIDE the rash biopsied.

 

 

3) The vertigo I've experienced off/on also for years has been attributed to salt and water retention - I'm wondering whether it might be a combo salt/gluten issue?

 

Yep again. There are some around here who had really bad vertigo. Bloating can be pretty bad in celiacs... I thought mine was water retention for quite some time.

 

When you get tested, request as many tests as possible because the tests do miss some celiacs. The full panel is:

tTG IgA and tTG igG

DGP IgA and DGP IgG

EMA IgA

total serum IgA

AGA IgA and AGA IgG (older and less reliable tests)

 

For thyroid testing, try to get:

TSH (most with thyroid problems feel best near a 1)

Free T4 and Free T3 (should be in the 50-75% range of your lab's normal reference range) - don't do T4 and T3 (aka total T4 and total T3)

TPO Ab

 

Good luck! I hope you get clear results!

[Syracusegirl1999]

Well, I think I may have the worst doctor ever. Without going into it, I had to remind him that I needed blood work done today. I asked 3 times about the full celiac panel, and I still don't think they did it. So, looking for a new doctor . . . (one that listens to me about my hands, abdominal pain, sinuses, etc.) 

 

However, I did get the thyroid panel done, and my results are:

 

TSH: 1.21, normal range is .47-4.68

T4 Free: 1.0, range is .8-2.22

 

My T4 has stayed the same in a year, my TSH has gone down (from 1.68).

 

Like I said, I am looking for a new doctor, one I hope listens to me. 

[nvsmom]

I hope you find a better doctor - he sounds like a dud.

 

Your TSH looks not too bad but your FT4 could be a bit low... it would be for me anyways. If possible, in the future, try to get a FT3 test done; it's the sctive hormone and often gives a better picture.

 

let us know how the blood work goes.  

[Syracusegirl1999]

I got my Vitamin D test results back today (online)

 

2013: 13, range 30-100

2012: 15, range 30-100

 

So, continuing my Vitamin D supplements . . . still no word on my other testing

[cyclinglady]

Keep pushing for the Celiac Blood Panel.  I agree, your doctor is not up-to-snuff on diagnosing celiac disease.    My husband has not had a single sinus infection since going gluten-free twelve years ago!  No snoring either (except when he's been accidentally exposed to gluten).  

 

Best of luck to you!

[Syracusegirl1999]

I got a result today ....

Tissue Transglutaminase AB, IGA of <1.2, standard range of <4.0 is negative

I'm not sure I totally understand what the result means. Still researching and keeping my symptom journal.

[nvsmom]

I got a result today ....

Tissue Transglutaminase AB, IGA of <1.2, standard range of <4.0 is negative

I'm not sure I totally understand what the result means. Still researching and keeping my symptom journal.

 

Your tTG IgA is negative for celiac. This is the most commonly run celiac test. It's a pretty good test but can miss 5-20% of all celiacs as seen in this report: Open Original Shared Link Doctors in my city only run the tTG IgA and then the EMA IgA if it was positive. Most doctors up here haven't even heard of the DGP tests.  

 

Did they run the total serum IgA? It's a control test to ensure that you make enough IgA for your tests to be accurate - 5% of celiacs are deficient in IgA.

 

Are there any other tests pending? The DGP tests, and the tests using IgG, can show up as positive when the tTG IgA is negative, although many doctors won't admit that. 

 

Best wishes.

[frieze]

I got my Vitamin D test results back today (online)

 

2013: 13, range 30-100

2012: 15, range 30-100

 

So, continuing my Vitamin D supplements . . . still no word on my other testing

what are you doing for Vit D supplement???  an increase (actually stat. insignificant) of 2 is totally unacceptable !  obviously need to increase supplementation and/or change supplement.  if you are taking D2 change that to D3.  good luck.

[Syracusegirl1999]

what are you doing for Vit D supplement???  an increase (actually stat. insignificant) of 2 is totally unacceptable !  obviously need to increase supplementation and/or change supplement.  if you are taking D2 change that to D3.  good luck.

I was taking a D3 capsule supplement, and have switched to a liquid version. I know that my blood work came back negative, but I still think with my symptoms, low Vitamin D, thyroid on the lower side that I'm going to see how I feel on a gluten free plan. I have had protein laden salads the past week for lunch, no sandwiches, and my hypoglycemia has been kept at bay. 

 

My mom says repeatedly that I've never been normal when it comes to health (always had lower than normal body temperature), so I'm taking the blood test results as just results from a particular day. 

 

I am still keeping my symptom journal, because when I go in next I want something to back up what I'm saying.

[frieze]

I was taking a D3 capsule supplement, and have switched to a liquid version. I know that my blood work came back negative, but I still think with my symptoms, low Vitamin D, thyroid on the lower side that I'm going to see how I feel on a gluten free plan. I have had protein laden salads the past week for lunch, no sandwiches, and my hypoglycemia has been kept at bay. 

 

My mom says repeatedly that I've never been normal when it comes to health (always had lower than normal body temperature), so I'm taking the blood test results as just results from a particular day. 

 

I am still keeping my symptom journal, because when I go in next I want something to back up what I'm saying.

not trying  to beat you over the head...the D cap weren't the little green footballs, I hope?  you got them OTC, yes?

PS: check out the vitamin D council website, don't think I can post url?  probably doubling the dose will be nec, if not more.

[Syracusegirl1999]

Yep, got them OTC but they weren't green - they were liquicaps. My dr said nothing about dosage except to either drink 2 glasses of milk, 3-4 glasses of Sunny Delite or spend 40 minutes in the sun - which after having a 3rd degree sunburn + chicken pox when I was 8 and the fact that my dad's fighting skin cancer I said the sun and I aren't besties.

My liquid vitamin d is a D3 and I like it so far.

But no dosage recommendations - again, my doctor is an idiot.

[frieze]

Yep, got them OTC but they weren't green - they were liquicaps. My dr said nothing about dosage except to either drink 2 glasses of milk, 3-4 glasses of Sunny Delite or spend 40 minutes in the sun - which after having a 3rd degree sunburn + chicken pox when I was 8 and the fact that my dad's fighting skin cancer I said the sun and I aren't besties.

My liquid vitamin d is a D3 and I like it so far.

But no dosage recommendations - again, my doctor is an idiot.

ok, that would be D3, lol. a rough guestemate is 1000 IU per 10 points you want to raise the test.  If you carry extra fat you will need even more. twenty minutes in the sun would be plenty, you don't want to get even pink, never mind a tan!

[Syracusegirl1999]

Yeah, I try to avoid the sun at all costs. The pain, the time and the consequences are too much in my case. 

[GF Lover]

Syracusegirl,

 

I'm sure you know this, if your planning to be in the sun for more than 5 minutes you should wear sunscreen, even in Winter.  Hope things improve for you.

 

Colleen

[frieze]

Syracusegirl,

 

I'm sure you know this, if your planning to be in the sun for more than 5 minutes you should wear sunscreen, even in Winter.  Hope things improve for you.

 

Colleen

But, you see, that is counter productive....

[GF Lover]

But, you see, that is counter productive....

 

But, you see, skin cancer can kill you.  You can supplement Vit. D if needed.  This is my opinion and obviously a concern to the OP.

 

Colleen

[frieze]

unless you have some genetic issue....10 minutes in the sun isn't going to do that.  and it is the "natural" means of obtaining Vitamin D

But, you see, skin cancer can kill you.  You can supplement Vit. D if needed.  This is my opinion and obviously a concern to the OP.

 

Colleen

[GF Lover]

unless you have some genetic issue....10 minutes in the sun isn't going to do that.  and it is the "natural" means of obtaining Vitamin D

 

Frieze,

 

As someone who has skin cancer, I was addressing her specific concerns about the sun and time spent in it.  This disease has touched her life and her reluctance to "sunbathe" is valid.  I'm sure she will decide for herself what she will and will not do.  Trying to convince someone to go in the sun for any amount of time when they have a "real" fear is fruitless.  Supplementing is an option.

 

Colleen

[Syracusegirl1999]

I'm overly cautious is all, especially as I'm extremely fair. 

[Cara in Boston]

You need to get the full panel of blood tests before you assume you are negative.  My son tested positive on all the IgG tests but negative on the IgA (even though his levels are fine).  He also tested "negative"  (low probability) on the genetic test.  His biopsy was positive for celiac and his symptoms all vanished when he went gluten free.

 

If he had been tested by your doctor (incomplete) he would still be sick today.

 

Lots of people test negative on the IgA tests . . . that is why they recommend the PANEL of tests.

 

GO SOX

 

Cara