Newly Diagnosed

[aikiducky]

Does it sound too weird to say congratulations? Of course I wouldn't wish celiac disease on anyone, but if you have it, it's nice to at least have a gold standard diagnosis...

Here's to a smooth adjustment to the gluten free life!

Pauliina

[Lizz7711]

Well, I just got off the phone with the GI specialist, and the biopsy result was (drumroll please)..... total villious atrophy. I'm glad I did the procedure, as it leaves no doubt as to whether or not I have celiac disease (it's the "gold standard" after all).

Cheers,

-Geoff.

Hi Geoff,

well, no doubt about it now eh? Now you can start healing--besides the diet i've heard alot of people recommend probiotic supplements and L-glutamine for intestinal healing, vitamin c, iron + calcium (for malabsorption issues), and also staying away from harder to digest foods for a while like beans and nuts/seeds. Anyway, i'm sure you'll do fine, good luck and God bless on the new journey

Liz

p.s. i've got a big exam tomorrow, but if I get a chance I will try to find some info on the hypothyroid question tomorrow night! no promises though!

[Blitz]

Hi Geoff,

well, no doubt about it now eh? Now you can start healing--besides the diet i've heard alot of people recommend probiotic supplements and L-glutamine for intestinal healing, vitamin c, iron + calcium (for malabsorption issues), and also staying away from harder to digest foods for a while like beans and nuts/seeds. Anyway, i'm sure you'll do fine, good luck and God bless on the new journey

Liz

p.s. i've got a big exam tomorrow, but if I get a chance I will try to find some info on the hypothyroid question tomorrow night! no promises though!

As always, thanks for the support!

No worries on those references. I'm sure I've got enough already to keep the doc busy for a while, what with the various blood test requests. The actual interpretation part will come later.

Cheers,

-Geoff.

[Lizz7711]

As always, thanks for the support!

No worries on those references. I'm sure I've got enough already to keep the doc busy for a while, what with the various blood test requests. The actual interpretation part will come later.

Cheers,

-Geoff.

sorry I couldn't get around to doing the research! hope your doc is up on the latest with these labs...just remember to ask for free T3 and freeT4 if you didn't get those yet. Low iron also is often associated with hypothyroid, and celiac of course, so you should check TIBC (total iron binding capacity) and ferritin.

hope it goes well!

Liz

[Blitz]

sorry I couldn't get around to doing the research! hope your doc is up on the latest with these labs...just remember to ask for free T3 and freeT4 if you didn't get those yet. Low iron also is often associated with hypothyroid, and celiac of course, so you should check TIBC (total iron binding capacity) and ferritin.

hope it goes well!

Liz

Liz, as I said before, no worries about that. I know people are busy, it's the nature of our society (unfortunately).

The doctor didn't give me any resistance to running the tests I requested. The only one he couldn't get was the saliva cortisol test, although he did check. He said it may be a US-only test, and simply not available here in Canada. Or perhaps it's just the lab they deal with (directly) doesn't do it. I will wait anxiously for the results, which hopefully won't take too long.

I had a momentary lapse of concentration this morning though, and accidentally took a bite of someone's zuccini bread when offered. I realized what I'd done before swallowing, and promptly, uhh, removed it from my mouth. I don't think any real damage will be done (denial?), but I'm just angry at myself for letting it happen at all.

Cheers!

-Geoff.

[Gaye of PA]

[- it sure would be handy sometimes to have an official diagnosis. And the only time that can reliably happen is before you go gluten free.

Pauliina

[happygirl]

Well, I just got off the phone with the GI specialist, and the biopsy result was (drumroll please)..... total villious atrophy. I'm glad I did the procedure, as it leaves no doubt as to whether or not I have celiac disease (it's the "gold standard" after all).

Cheers,

-Geoff.

Geoff,

Although I certainly don't wish a "disease" on anyone, I know that you must be relieved to have a rock solid diagnosis, so that you can work on getting better and getting on with life!

Laura

[happygirl]

Can you tell me some specific instances of where an official diagnosis would come in handy? I've just received positive blood test results and don't know what to do next, if anything. Thanks!

[Lizz7711]

Liz, as I said before, no worries about that. I know people are busy, it's the nature of our society (unfortunately).

The doctor didn't give me any resistance to running the tests I requested. The only one he couldn't get was the saliva cortisol test, although he did check. He said it may be a US-only test, and simply not available here in Canada. Or perhaps it's just the lab they deal with (directly) doesn't do it. I will wait anxiously for the results, which hopefully won't take too long.

I had a momentary lapse of concentration this morning though, and accidentally took a bite of someone's zuccini bread when offered. I realized what I'd done before swallowing, and promptly, uhh, removed it from my mouth. I don't think any real damage will be done (denial?), but I'm just angry at myself for letting it happen at all.

Cheers!

-Geoff.

Hi Geoff,

Hope you're feeling ok after your accidental exposure! I think because my reactions are more autoimmune and I don't have the malabsorption so perhaps less intestinal damage...my reactions to accidental gluten are not easily noticed by me...in a way I wish i'd have a stronger reaction to help keep me diligent. I'm very strict, but probably less so about eating at restaurants and the whole cross-contamination issue than others who feels the effects right away. It's still damaging my body, but I don't know it!

For the saliva cortisol test, you can order it through "Canary Club"...I think the link is on that thryoid madness website, or you might be able to google it...I don't see why you couldn't order it from Canada...cost about $140/not covered by insurance.

Let us know the lab results! take care,

Liz

[Blitz]

Bump. Well, just to update, I got my Doctor to run a bunch of the tests as recommended on StopTheThyroidMadness.com a few weeks back. And just yesterday I got a call from his office saying that he wanted to see me to discuss the results. I managed to make an appointment for tomorrow evening, which is good because he's away for 2.5 wks after that, and I don't know if I could stand the wait.

I've been on the gluten-free diet for just over four weeks now, and so far I haven't felt any change in the chronic fatigue. And now that we know there's something up with either my thyroid or adrenals, it's becoming clearer why.

So, although it may sound a bit odd, I'm anxiously looking forward to this doctor's visit.

Cheers!

Geoff.

[Lizz7711]

Bump. Well, just to update, I got my Doctor to run a bunch of the tests as recommended on StopTheThyroidMadness.com a few weeks back. And just yesterday I got a call from his office saying that he wanted to see me to discuss the results. I managed to make an appointment for tomorrow evening, which is good because he's away for 2.5 wks after that, and I don't know if I could stand the wait.

I've been on the gluten-free diet for just over four weeks now, and so far I haven't felt any change in the chronic fatigue. And now that we know there's something up with either my thyroid or adrenals, it's becoming clearer why.

So, although it may sound a bit odd, I'm anxiously looking forward to this doctor's visit.

Cheers!

Geoff.

Hi Geoff,

now i'm anxious to know! Keep us posted...can't remember if I told you and don't feel like scanning all the other posts...but if he agrees your adrenals need help (which i'd be surprised if he actually does since most docs know next to nothing about it, but maybe they are enlighted up there in Toronto ), ask for Cortef--it's very low physiologic dose hydrocortisone--zero side effects because it's just to replace the cortisol your adrenals should be making themselves in a day--you take it 4 times a day (big pain, but when you feel better believe me you will make sure to take it!--I used to feel tired just folding laundry, and now fatigue is a non-issue) as it works with your circadian rhythm of the adrenals.

Anyway, good luck!

Liz

[Blitz]

now i'm anxious to know! Keep us posted...can't remember if I told you and don't feel like scanning all the other posts...but if he agrees your adrenals need help (which i'd be surprised if he actually does since most docs know next to nothing about it, but maybe they are enlighted up there in Toronto ), ask for Cortef--it's very low physiologic dose hydrocortisone--zero side effects because it's just to replace the cortisol your adrenals should be making themselves in a day--you take it 4 times a day (big pain, but when you feel better believe me you will make sure to take it!--I used to feel tired just folding laundry, and now fatigue is a non-issue) as it works with your circadian rhythm of the adrenals.

Hi Liz,

I will certainly post the results. Perhaps the docs up here are more enlightened than elsewhere, but somehow I doubt it. Thanks for the info on Cortef, I will ask him about that for sure.

Cheers!

Geoff.

[Lizz7711]

Hi Liz,

I will certainly post the results. Perhaps the docs up here are more enlightened than elsewhere, but somehow I doubt it. Thanks for the info on Cortef, I will ask him about that for sure.

Cheers!

Geoff.

Hi Geoff,

What's the news?? Hope all is well,

Liz

[Blitz]

Hi Geoff,

What's the news?? Hope all is well,

Liz

Hi Liz,

Sorry for the delay, got tied up with some family stuff (got two members currently in hospital - and not the same one either).

I was a bit disappointed with the results, as nothing conclusive showed up (according to my doc's diagnosis). I've included the complete test results below, although I honestly don't know what many of them are (I'll google for them when I get a chance). I've put the "normal" range in brackets, and bolded any that were out of that range.

* B12 - 266 (>110)

* Ferritin - 27 (41-300)

* TSH - 2.00 (0.35-5.00)

* T4 Free - 12 (10-20)

* Free T3 - 3.8 (2.6-5.70)

* LH - 2 (1 - 9.00)

* Cortisol 1600-2000h - 229 (65-340)

* DHEAS - 10.3 (2.6-7.70)

* Testosterone - 21.5 (8.0-38.0)

* Progesterone - 0.8 (<1.99)

* Estradiol - 74 (<160.99)

* Hb - 159 (135-170)

* Hct - 0.46 (0.38-0.490)

* RBC - 5.14 (4.2-5.70)

* MCV - 89.5 (80-97.0)

* MCH - 30.9 (27-32.0)

* MCHC - 345 (320-360)

* Random Dist. Width - 12.8 (11.5-15.5)

* WBC - 5.5 (4-11.0)

* Platelets - 239 (145-400)

* MPV - 7.7 (7.4-11.3)

* Differential WBC's:

--> Neutrophils (A) - 3.52 (1.80-7.00)

--> Lymphocytes (A) - 1.32 (1.00-3.20)

--> Monocytes (A) - 0.50 (0-0.80)

--> Eosinophils (A) - 0.17 (0-0.40)

--> Basophils (A) - 0 (0-0.20)

* Free Testosterone - 43.2 (31.0-94.0)

* Anti-Thyroid Peroxidase - POS (NEG)

* Anty-Thyroglobulin - NEG (NEG)

The doctor said my ferritin levels will come up once the damage to my intestines recovers, but that it may take some time for that to happen.

I guess I was hoping for either the thyroid or adrenals to show something, so that I could start feeling better sooner. All this waiting for improvement is agonizing, and to date there really hasn't been any (in fact, this week I feel pretty crummy).

Thanks for all your help!

-Geoff.

[aikiducky]

One thing that struck me was that even though your B12 was normal it wasn't very high. It might help to take a supplement if you aren't already. Many people experience symptoms of low B12 way before their levels drop to what doctors consider too low I've noticed reading the boards.

Pauliina

[Blitz]

One thing that struck me was that even though your B12 was normal it wasn't very high. It might help to take a supplement if you aren't already. Many people experience symptoms of low B12 way before their levels drop to what doctors consider too low I've noticed reading the boards.

Hi Paulina,

Thanks for your input. I have no experience in this regard, so just wondering if you could expand on what you consider normal and high B12 levels.

On a related note, I asked both my pharmacist and doctor about where/how to get sublingual B12 tablets, and both looked at me like I had three heads. So, apparently these are either (i) a big secret, (ii) not available in Canada, (iii) both my pharma and doc are living in the 1800's, or (iv) all of the above. The reason I was looking for the sublingual variety is that I've read the absorption ratio of them is significantly higher than the kind you swallow, and almost as good as the shots.

Also, I've been considering taking iron supplements, as my ferritin levels were low. But I'm questioning this wisdom of this, because obviously my system isn't currently able to absorb whatever iron I'm ingesting as it is. My figuring says that simply ingesting more, in the form of tablets, won't necessarily help.

Cheers!

-Geoff.

[Lizz7711]

Hi Geoff,

I posted your lab results on a adrenal/thyroid forum (don't worry, just the numbers no other info) and here are the two answers I got:

"Well, his B-12, Ferritin, FT4, and FT3 are all low. B-12 should optimally be

close to 1000, Ferritin (iron) should be at least 40-70. And the Free T4 and

T3 are both low, so he needs more thyroid. I don't know much about the sex

hormones yet. The cortisol level would depend on the time of day. It would

be very helpful if he got a 24 hour salvia cortisol test done to check for

adrenal fatiuge. He definately needs to get that B-12 and iron level up

though as low levels of these can interefere with thyroid dosing.

Rie"

"HIs Ferritin is very low as men need it even higher than women and women

need it ot be 70-90. HIs testosteroine is in the DIRT. For men this is

VERY important even more so than women and his htyroid is veyr low and

he has Hashi's. Possibluy should do the cortilsl saliva testing to find

out about adrenals."

--

Valerie Taylor Artistic Grooming- Hurricane WV

Open Original Shared Link

Open Original Shared Link

The link to that group is above, and the second response was from the woman who created the stopthethyroidmadness website. It's a super busy forum and she moderates it so usually gives pretty short answers (with tons of typos, lol). Anyway, they are pretty knowledgable, so it might be worth going on the forum to ask some questions.

It's true that you do need to heal before your body will absorb as it should, but that doens't mean you shouldn't take extra iron and B12 because your body will absorb SOME, and you want those levels to rise. For the iron, they recommend taking 200mg of either ferrous gluconate or bis-glycinate, there are a couple others that absorb well but I'll have to find the names. I've been taking the bis-glycinate form and have had no problems with constipation. If you take iron with 1000mg vitamin C it will absorb better. Do not take iron anywhere near taking calcium as it will interfere with that absorption. By the way, you should definitely make sure to get extra calcium becuase your bones are probably depleted somehwat due to the malabsorption as well...maybe you can ask for a DEXA scan of your bone density. They can't tell that from a blood test becasue your body will always maintain the serum level necessary. Hypothyroid can also be a cause of low iron by the way. But treating hypothyroid before your iron levels go up is not a good idea.

You CAN at least support your adrenals even if you do not go on Cortef (I really recommend the saliva testing, and if you test poorly, beg the doc for Cortef). To support adrenals you want (this was from my doctor): vitamin B5 1-2 g/day; B6 400mg/day; vitamin A (not betacarotene) 15-20000IU/day; Chromium 1 g/3xperday. You also want to take 3000mg of vitamin C (you can do it in 3- 1000 mg doses with your iron at meal time). There are other things like ashwaganda and rhodiola that help as well.

The best B12 is in the methylcobalamin form as this needs no conversion in the body and will be best absorbed, and yes you do want sublingual. But it's hard to find sublingual methylcobalamin. The brand I find at health food stores here is made by the company "Enzymatic"--you can take 1000-3000 mcg per day. Even better would be weekly injections of methyl B12 if you can find a holistic doctor up there! But if you can't find the B12 at the store, i'm sure you can order it online.

I can't say enough that underlying everything are burnt out adrenals and if they don't get some attention, nothing else will take as well and the healing will take that much longer and the fatigue will not go away as quickly. Also, when you do the adrenal saliva testing, they look at all the other hormones.

HOpe this helps, if you ever want to just email me direct feel free: Lizz7711@yahoo.com

Liz

Hi Liz,

Sorry for the delay, got tied up with some family stuff (got two members currently in hospital - and not the same one either).

I was a bit disappointed with the results, as nothing conclusive showed up (according to my doc's diagnosis). I've included the complete test results below, although I honestly don't know what many of them are (I'll google for them when I get a chance). I've put the "normal" range in brackets, and bolded any that were out of that range.

* B12 - 266 (>110)

* Ferritin - 27 (41-300)

* TSH - 2.00 (0.35-5.00)

* T4 Free - 12 (10-20)

* Free T3 - 3.8 (2.6-5.70)

* LH - 2 (1 - 9.00)

* Cortisol 1600-2000h - 229 (65-340)

* DHEAS - 10.3 (2.6-7.70)

* Testosterone - 21.5 (8.0-38.0)

* Progesterone - 0.8 (<1.99)

* Estradiol - 74 (<160.99)

* Hb - 159 (135-170)

* Hct - 0.46 (0.38-0.490)

* RBC - 5.14 (4.2-5.70)

* MCV - 89.5 (80-97.0)

* MCH - 30.9 (27-32.0)

* MCHC - 345 (320-360)

* Random Dist. Width - 12.8 (11.5-15.5)

* WBC - 5.5 (4-11.0)

* Platelets - 239 (145-400)

* MPV - 7.7 (7.4-11.3)

* Differential WBC's:

--> Neutrophils (A) - 3.52 (1.80-7.00)

--> Lymphocytes (A) - 1.32 (1.00-3.20)

--> Monocytes (A) - 0.50 (0-0.80)

--> Eosinophils (A) - 0.17 (0-0.40)

--> Basophils (A) - 0 (0-0.20)

* Free Testosterone - 43.2 (31.0-94.0)

* Anti-Thyroid Peroxidase - POS (NEG)

* Anty-Thyroglobulin - NEG (NEG)

The doctor said my ferritin levels will come up once the damage to my intestines recovers, but that it may take some time for that to happen.

I guess I was hoping for either the thyroid or adrenals to show something, so that I could start feeling better sooner. All this waiting for improvement is agonizing, and to date there really hasn't been any (in fact, this week I feel pretty crummy).

Thanks for all your help!

-Geoff.

[Blitz]

Hi Liz,

Thanks for all the info. I don't have time to sift through it all at the moment (it's 2:30am), but I will surely do that when I get a chance. My doc is away for another week and a half, but I'll be sure to follow up with him upon his return... possibly including some begging and whatnot.

Thanks again, and cheers!

-Geoff.

[Skylarker]

Your doctor talked to you about this, right?

<<Anti-Thyroid Peroxidase - POS (NEG)>>

Doesn't this mean you're auto-immune to thyroid (Hashimoto's disease)? That would be a reason you feel lousy.

But I'm no doctor & I don't have the disorder so I don't know. Just wanted to make sure you noticed.

Skylarker

[Blitz]

Bump.

Boy, it's been a long time since I posted in this thread... been very busy with family stuff.

Aside from maintaining the gluten-free diet over the past while, I haven't made any changes to supplements taken. The logic behind this was that I had planned a one-week trip at the end of March, and I didn't want to screw it up.

By luck alone I have managed to find sublinual methylcobalamin B12 in my local pharmacy. I had previously asked a pharmacist at another location nearby, and she looked very puzzled and said they didn't carry it. The brand I found is called Webber Naturals, and I got it at Pharma-Plus (it's a chain).

I'm also going to beg my doctor to try out some of those other recommended items, such as the cortef, to see if it makes any difference. I'm sorry to report that I have not felt any relief from the constant fatigue since starting the gluten-free diet back in February.

Cheers,

Geoff.

Hi Geoff,

I posted your lab results on a adrenal/thyroid forum (don't worry, just the numbers no other info) and here are the two answers I got:

"Well, his B-12, Ferritin, FT4, and FT3 are all low. B-12 should optimally be

close to 1000, Ferritin (iron) should be at least 40-70. And the Free T4 and

T3 are both low, so he needs more thyroid. I don't know much about the sex

hormones yet. The cortisol level would depend on the time of day. It would

be very helpful if he got a 24 hour salvia cortisol test done to check for

adrenal fatiuge. He definately needs to get that B-12 and iron level up

though as low levels of these can interefere with thyroid dosing.

Rie"

"HIs Ferritin is very low as men need it even higher than women and women

need it ot be 70-90. HIs testosteroine is in the DIRT. For men this is

VERY important even more so than women and his htyroid is veyr low and

he has Hashi's. Possibluy should do the cortilsl saliva testing to find

out about adrenals."

--

Valerie Taylor Artistic Grooming- Hurricane WV

Open Original Shared Link

Open Original Shared Link

The link to that group is above, and the second response was from the woman who created the stopthethyroidmadness website. It's a super busy forum and she moderates it so usually gives pretty short answers (with tons of typos, lol). Anyway, they are pretty knowledgable, so it might be worth going on the forum to ask some questions.

It's true that you do need to heal before your body will absorb as it should, but that doens't mean you shouldn't take extra iron and B12 because your body will absorb SOME, and you want those levels to rise. For the iron, they recommend taking 200mg of either ferrous gluconate or bis-glycinate, there are a couple others that absorb well but I'll have to find the names. I've been taking the bis-glycinate form and have had no problems with constipation. If you take iron with 1000mg vitamin C it will absorb better. Do not take iron anywhere near taking calcium as it will interfere with that absorption. By the way, you should definitely make sure to get extra calcium becuase your bones are probably depleted somehwat due to the malabsorption as well...maybe you can ask for a DEXA scan of your bone density. They can't tell that from a blood test becasue your body will always maintain the serum level necessary. Hypothyroid can also be a cause of low iron by the way. But treating hypothyroid before your iron levels go up is not a good idea.

You CAN at least support your adrenals even if you do not go on Cortef (I really recommend the saliva testing, and if you test poorly, beg the doc for Cortef). To support adrenals you want (this was from my doctor): vitamin B5 1-2 g/day; B6 400mg/day; vitamin A (not betacarotene) 15-20000IU/day; Chromium 1 g/3xperday. You also want to take 3000mg of vitamin C (you can do it in 3- 1000 mg doses with your iron at meal time). There are other things like ashwaganda and rhodiola that help as well.

The best B12 is in the methylcobalamin form as this needs no conversion in the body and will be best absorbed, and yes you do want sublingual. But it's hard to find sublingual methylcobalamin. The brand I find at health food stores here is made by the company "Enzymatic"--you can take 1000-3000 mcg per day. Even better would be weekly injections of methyl B12 if you can find a holistic doctor up there! But if you can't find the B12 at the store, i'm sure you can order it online.

I can't say enough that underlying everything are burnt out adrenals and if they don't get some attention, nothing else will take as well and the healing will take that much longer and the fatigue will not go away as quickly. Also, when you do the adrenal saliva testing, they look at all the other hormones.

HOpe this helps, if you ever want to just email me direct feel free: Lizz7711@yahoo.com

Liz

[Lizz7711]

Hi Geoff! I just happened to check this forum today and noticed your post, good to hear from you again!

You can take up to 5000mcg of B12 without problems, so don't worry about taking a couple of those a day.

If you can get your doc to prescibe cortef for you that would be great...tell him you just want to try it for a month if he's unsure..and at a physiologic dose of 20mg per day. Then if he agrees, I would taper up to 15 or 20 per day slowly...you take it 3 or 4 times a day (pills are 5 mg). If you're like me, you'll notice major improvement within a week. Then, if it does help, I would strongly encourage you to STOP taking it for a couple weeks, order the saliva cortisol test through canaryclub online, so that you get a baseline and know your stage of adrenal fatigue. I never did that, and now there's no way I could go off this stuff because i'd get too irritable (it's helped me so much and I don't want to go back to where I was!)

Did you do any of the home tests? (flashlight, blood pressue etc)

Liz

Bump.

Boy, it's been a long time since I posted in this thread... been very busy with family stuff.

Aside from maintaining the gluten-free diet over the past while, I haven't made any changes to supplements taken. The logic behind this was that I had planned a one-week trip at the end of March, and I didn't want to screw it up.

By luck alone I have managed to find sublinual methylcobalamin B12 in my local pharmacy. I had previously asked a pharmacist at another location nearby, and she looked very puzzled and said they didn't carry it. The brand I found is called Webber Naturals, and I got it at Pharma-Plus (it's a chain).

I'm also going to beg my doctor to try out some of those other recommended items, such as the cortef, to see if it makes any difference. I'm sorry to report that I have not felt any relief from the constant fatigue since starting the gluten-free diet back in February.

Cheers,

Geoff.