Newly Diagnosed

[Blitz]

Hi All,

I'm fairly new here, so I just thought I'd introduce myself and give my relevant background. Any suggestions and advice from you experts would be most appreciated.

I'm a 30 year old male, and have been suffering from chronic fatigue since a few months after my 18th birthday (almost 12 years now). At that time I got hives, which my doctor dismissed as just a food allergy that would pass. It ended up lasting about a month in total. During this period, I took Benadryl and felt sleepy and fatigued, which we assumed was the drowsy effect of Benadryl. However, once the hives disappeared and I stopped taking Benadryl, the fatigue continued.

I brought this to the attention of my family doctor when it still hadn't gone away a few months later. She ran a few tests, including mono, and it came back positive that I had it in the past. I also complained of depression, and was put on Zoloft. Unfortunately, that doctor quit the profession altogether about a year later, and pretty much left me stranded.

Then, about a year and half ago I managed to finally get a family doctor. He started with a full physical, including standard bloodwork, and the only item flagged there was low folates, for which I was instructed to take Folic Acid supplements.

Based on my condition, he started referring me... first to an allergist (grass and cats), then a sleep lab for an overnight study (negative for apnea and restless legs), and then a rheumatologist (negative bloodwork).

My new family doc seemed pretty receptive to ideas, so I recently started making suggestions based on my years of research into possible causes of my condition. One of these was Celiac, so we did the test a few weeks ago, and the result came back this week as positive for all three tests he did. I'm not sure exactly what tests they were specifically, but I'm going to try and get a copy of them.

I'm now being referred to a GI specialist, who I'm told will probably want to do a biopsy. But it could take a while just to get the first appointment.

Family-wise, there's only one person I know of that diagnosed celiac disease, and it's my Mother's Father's Sister's Son (my cousin). However, my mother has had a fair bit of GI trouble over the years, which she was told was Irritable Bowel Syndrome. She said she has never been tested for celiac disease, so I'm thinking maybe she should get it done, because if she comes back positive it may explain a few things.

So, it would appear in retrospect that I was probably genetically predisposed to celiac disease, and then the mono I got when I was 18 triggered it to start.

Needless to say I'm pretty anxious about the whole situation. My current condition is not very good, as the chronic fatigue has gotten progressively worse over the past 11.5+ years. I'm not able to do much of any strenuous physical activity, and at the end of the day I'm completely exhausted. I've also noticed some mental fogginess and memory problems creeping in over the years. And I'm in the unfortunate position of being self-employed (IT consulting) and without any disability insurance. So, I have to keep working to make a living.

So, in the meantime I've started rummaging around the net looking for info. A lot of what I've found suggests that I shouldn't start on a gluten-free diet until I've had the biopsy, as it can skew the results negatively. But I think I'll probably give it a try after that, regardless of what the outcome of those tests are.

Sorry for the long post guys. If anyone has any information or suggestions, I'd be really glad to hear them.

Thanks in advance!

Blitz.

[confused]

Welcome,

You have came to the right place. Once you go gluten free you will feel so much better, You might also have to give up dairy for the first 6 months to, cause it can cause some of the same symptoms as gluten.

Once you are diagnosed your close relatives should be tested.

Some do not wait for the biopsy to start gluten free if the blood work is high enought, but an biopsy is a good idea if they are looking for other diseases. I for one took the blood work results and ran but then again i have DH also, so there is no way going around the fact i have celiac.

If you have any questions please feel free to ask.

paula

[elye]

Welcome, Blitz!

If your blood panel was positive, you have celiac. There are no false positives, only false negatives. Therefore, having a subsequent biopsy will not strengthen the evidence that you have the illness, as you certainly do. It will determine if your lower intestine has sustained any damage, and the extent of it. Many people are so ill from gluten that they will start the gluten-free diet immediately after the positive blood work, not wanting to prolong the ordeal for a biopsy that may not offer any other information.

It's up to you to decide if you need to have the biopsy done, but I know if I were sick, I'd be running as far away from gluten as possible, immediately. Good luck!

[Blitz]

If your blood panel was positive, you have celiac. There are no false positives, only false negatives.

One of the blood tests was really high too... something like 132 (normal is < 19.9). I'll figure out which one when I get a copy from the doc's office.

Therefore, having a subsequent biopsy will not strengthen the evidence that you have the illness, as you certainly do. It will determine if your lower intestine has sustained any damage, and the extent of it.

It sounds like having the biopsy may be redundant in my case, because of the positive blood tests. I guess it would be more necessary if they were indeterminate.

Many people are so ill from gluten that they will start the gluten-free diet immediately after the positive blood work, not wanting to prolong the ordeal for a biopsy that may not offer any other information. It's up to you to decide if you need to have the biopsy done, but I know if I were sick, I'd be running as far away from gluten as possible, immediately. Good luck!

I must admit I'm very anxious to start on the gluten-free diet and hopefully start feeling better. There's probably no better time, as I'm currently single and living alone. Although I'd have to do a major clean-out of all the offending items.

Thanks for all your advice, it's most appreciated!

Blitz.

[Blitz]

Once you go gluten free you will feel so much better, You might also have to give up dairy for the first 6 months to, cause it can cause some of the same symptoms as gluten.

I've read that, but how do I know if that's the case? Or is it recommended to just automatically give up both at the first, and then try adding milk back in later?

Once you are diagnosed your close relatives should be tested.

Well, I'm an only child, so no worries about siblings (although my Dad has children from a previous marriage). My Mother's the one with all the GI problems and food allergies, and it's also her side of the family with a known celiac, so I told her today to just get tested next time she's at the doctor's.

Some do not wait for the biopsy to start gluten free if the blood work is high enought, but an biopsy is a good idea if they are looking for other diseases. I for one took the blood work results and ran but then again i have DH also, so there is no way going around the fact i have celiac.

Okay, but going gluten-free wouldn't affect any biopsy results for other diseases would it?

Thanks!

Blitz.

[aikiducky]

You know, if you can hang in there until after the biopsy I would urge you to have it done now. Then go gluten free immediately afterwards whatever the results say. But having a positive biopsy means no doctor will have grounds for doubting your diagnosis in the future, and since we are talking about all of the rest of your life, that might come in handy some time in the future. It's also a requirement if you ever want to take part in a study for example.

I went gluten free before having any testing, and though I don't need an official diagnosis for my own motivation - I get sick enough from gluten that I never want to eat it again - 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

[Lizz7711]

You might want to look into how your adrenals are doing....the extreme fatigue is probably due to them being totally fatigued after years of dealing with gluten coming into your system and immune system in active gear all the time. My doc prescibed cortef (low level hydrocortisone) for me based on symptoms (many) of adrenal fatigue and I felt so much better just in a couple days. There are blood tests I think, but alot of people do saliva testing for cortisol levels. Also you should check your thyroid function as well as iron, total iron binding capacity, % saturation, and ferritin especially. Low iron/ferritin can definitely cause low energy and is caused by either hypothyroid and/or malabsorption from celiac.

I recently had positive blood tests as well, and have been gluten-free and CF (casein free) for the past two months. I'm going to skip the biopsy I think, although i'm still thinking about it for the reasons one person mentioned, the diagnosis might come in handy sometime...then again it might bite me by causing uninsurability? not sure about all that yet though.

Good luck!

Hi All,

I'm fairly new here, so I just thought I'd introduce myself and give my relevant background. Any suggestions and advice from you experts would be most appreciated.

I'm a 30 year old male, and have been suffering from chronic fatigue since a few months after my 18th birthday (almost 12 years now). At that time I got hives, which my doctor dismissed as just a food allergy that would pass. It ended up lasting about a month in total. During this period, I took Benadryl and felt sleepy and fatigued, which we assumed was the drowsy effect of Benadryl. However, once the hives disappeared and I stopped taking Benadryl, the fatigue continued.

I brought this to the attention of my family doctor when it still hadn't gone away a few months later. She ran a few tests, including mono, and it came back positive that I had it in the past. I also complained of depression, and was put on Zoloft. Unfortunately, that doctor quit the profession altogether about a year later, and pretty much left me stranded.

Then, about a year and half ago I managed to finally get a family doctor. He started with a full physical, including standard bloodwork, and the only item flagged there was low folates, for which I was instructed to take Folic Acid supplements.

Based on my condition, he started referring me... first to an allergist (grass and cats), then a sleep lab for an overnight study (negative for apnea and restless legs), and then a rheumatologist (negative bloodwork).

My new family doc seemed pretty receptive to ideas, so I recently started making suggestions based on my years of research into possible causes of my condition. One of these was Celiac, so we did the test a few weeks ago, and the result came back this week as positive for all three tests he did. I'm not sure exactly what tests they were specifically, but I'm going to try and get a copy of them.

I'm now being referred to a GI specialist, who I'm told will probably want to do a biopsy. But it could take a while just to get the first appointment.

Family-wise, there's only one person I know of that diagnosed celiac disease, and it's my Mother's Father's Sister's Son (my cousin). However, my mother has had a fair bit of GI trouble over the years, which she was told was Irritable Bowel Syndrome. She said she has never been tested for celiac disease, so I'm thinking maybe she should get it done, because if she comes back positive it may explain a few things.

So, it would appear in retrospect that I was probably genetically predisposed to celiac disease, and then the mono I got when I was 18 triggered it to start.

Needless to say I'm pretty anxious about the whole situation. My current condition is not very good, as the chronic fatigue has gotten progressively worse over the past 11.5+ years. I'm not able to do much of any strenuous physical activity, and at the end of the day I'm completely exhausted. I've also noticed some mental fogginess and memory problems creeping in over the years. And I'm in the unfortunate position of being self-employed (IT consulting) and without any disability insurance. So, I have to keep working to make a living.

So, in the meantime I've started rummaging around the net looking for info. A lot of what I've found suggests that I shouldn't start on a gluten-free diet until I've had the biopsy, as it can skew the results negatively. But I think I'll probably give it a try after that, regardless of what the outcome of those tests are.

Sorry for the long post guys. If anyone has any information or suggestions, I'd be really glad to hear them.

Thanks in advance!

Blitz.

[Blitz]

You might want to look into how your adrenals are doing....the extreme fatigue is probably due to them being totally fatigued after years of dealing with gluten coming into your system and immune system in active gear all the time. My doc prescibed cortef (low level hydrocortisone) for me based on symptoms (many) of adrenal fatigue and I felt so much better just in a couple days. There are blood tests I think, but alot of people do saliva testing for cortisol levels. Also you should check your thyroid function as well as iron, total iron binding capacity, % saturation, and ferritin especially. Low iron/ferritin can definitely cause low energy and is caused by either hypothyroid and/or malabsorption from celiac.

I recently had positive blood tests as well, and have been gluten-free and CF (casein free) for the past two months. I'm going to skip the biopsy I think, although i'm still thinking about it for the reasons one person mentioned, the diagnosis might come in handy sometime...then again it might bite me by causing uninsurability? not sure about all that yet though.

Good luck!

Thanks for your input. I'll definitely talk to my family doctor about doing those additional blood/saliva tests, if there weren't already done recently (I had a physical not too long ago, but not sure what blood tests were done).

My appointment with the GI specialist is next Monday. I think once I talk to this guy I'll have a better idea of the timeline.

In terms of medical insurability, I don't have to worry about that here in Canada (socialized healthcare and all). But I do wonder about travel medical insurance, and other insurances, like life, disability, etc. I guess there's no harm in talking with the GI specialist, as he can't make any final diagnosis without doing the biopsy, so far as I understand. That way I'm still leaving my options open.

[Lizz7711]

Your regular doctor and GI guy most likely will now know much about adrenal testing (or think it's important). They will know about testing for hypothyroid--i'd be sure to ask for TSH, free T4 and free T3 for that. For more "unorthodox" but highly informative info on thyroid/adrenal issues go here: www.stopthethyroidmadness.com Click on the left of main page for adrenal info....your symptoms are SO indicative of adrenal burn-out and/or hypothyroid...but it's important to treat adrenal problems first since the body will not use the thyroid meds if adrenals aren't working. If you can find a good doctor who's into holistic medicine that would be the best situation.

With the gluten thing...if you feel better off gluten, you are sensitive no matter what the blood tests or endoscopy says. For other testing if interested, alot of people use entero lab online for stool testing of antibodies. www.enterolab.com there's a lot of good info on their website as well about celiac etc.

good luck!

Liz

Thanks for your input. I'll definitely talk to my family doctor about doing those additional blood/saliva tests, if there weren't already done recently (I had a physical not too long ago, but not sure what blood tests were done).

My appointment with the GI specialist is next Monday. I think once I talk to this guy I'll have a better idea of the timeline.

In terms of medical insurability, I don't have to worry about that here in Canada (socialized healthcare and all). But I do wonder about travel medical insurance, and other insurances, like life, disability, etc. I guess there's no harm in talking with the GI specialist, as he can't make any final diagnosis without doing the biopsy, so far as I understand. That way I'm still leaving my options open.

[Blitz]

Your regular doctor and GI guy most likely will now know much about adrenal testing (or think it's important). They will know about testing for hypothyroid--i'd be sure to ask for TSH, free T4 and free T3 for that. For more "unorthodox" but highly informative info on thyroid/adrenal issues go here: www.stopthethyroidmadness.com Click on the left of main page for adrenal info....your symptoms are SO indicative of adrenal burn-out and/or hypothyroid...but it's important to treat adrenal problems first since the body will not use the thyroid meds if adrenals aren't working. If you can find a good doctor who's into holistic medicine that would be the best situation.

With the gluten thing...if you feel better off gluten, you are sensitive no matter what the blood tests or endoscopy says. For other testing if interested, alot of people use entero lab online for stool testing of antibodies. www.enterolab.com there's a lot of good info on their website as well about celiac etc.

Thanks for the great info... but wow, do I ever feel overloaded these days.

I'm guessing the best thing to do is start on a gluten-free diet first, and see if things improve, before requesting additional tests? In any case I will discuss the adrenal/thyroid issue with the GI specialist and/or my family doctor.

[Blitz]

Hi All,

I neglected to mention some additional symptoms in my original post, so here they are now:

1. Excessive Perspiration - mostly underarms, but feet also. Been experiencing this for at least 10 years, maybe since the beginning of this journey even.

2. Clammy Feeling - probably related to #1. It doesn't take much to get me sweating and clammy, just a cup of hot tea will do it.

2. Hives - returned about 1.5 years ago (after a 10 year hiatus from the original bout during mono), and are kept at bay with a double-dose of Reactine every day (as instructed by my doctor).

Not sure if these have anything to do with celiac disease, but if anyone has any comments, I'm all ears.

Thanks in advance!

Geoff.

[Lizz7711]

Thanks for the great info... but wow, do I ever feel overloaded these days.

I'm guessing the best thing to do is start on a gluten-free diet first, and see if things improve, before requesting additional tests? In any case I will discuss the adrenal/thyroid issue with the GI specialist and/or my family doctor.

I would go gluten-free, and probably casein(dairy) free also. The proteins are extremely similar which is why the body often has a problem with both...but some people report being able to add dairy back in later, not gluten though. The endoscopy is valuable to know how much damage to the villi you have, but there is alwasy a chance they will take the samples from spots without the damage. If I was in your shoes, and wasn't already gluten-free, I might go ahead with the endoscopy, just because I like to KNOW what's going on in my body!

This is a link to the myriad of symptoms of hypothyroid:

Open Original Shared Link

And here is a link from teh same website to the symptoms of adrenal fatigue:

Open Original Shared Link

The sweating relates to the thyroid because it is so involved in temperature regulation of the body. Try taking your temp throughout the day. Most with hypothyroid have low temps and those with adrenal have low and also irregular/unstable, one day it's 97, one day it's 97.9 etc.

good luck!

Liz

[Blitz]

Saw the GI specialist today, and based on the blood tests he highly recommended going forward with the biopsy. So, long story short, I'm booked in for the biopsy next Tuesday.

My only concern with having a positive diagnosis was that it may make me ineligible for certain insurances (travel medical, life, disability, etc.) in future. However, after talking with an insurance broker that I do work for, I'm already screwed because of the blood test anyway. So, based on that, and the fact that they're able to get the biopsy scheduled so quickly, I figured might as well find out what's happening down there.

The GI doc congratulated me on getting the blood test done, because he said if he put me in a room with 100 GI's, only one or two would even suspect celiac disease (and I assume less for generalist doctors, i.e. family physicians). So I felt pretty good about that.

I also managed to get a copy of the blood test results which were sent from my family doctor for the referral. Here are the ones relating to celiac disease:

Gliadin IgA ABS. - 23 (norm. is <19.99)

Gliadin IgG ABS. - 53 (norm. is < 19.99)

Transglutaminase IgA - >100 (norm. is < 19.99)

With regard to the possible hypothyroidism mentioned by Liz, my TSH was 2.84 (norm. is 0.35 - 5.00). But this was from blood work done more than a year ago (Sep. 2006). However, based on the info I've been reading, this doesn't mean much without knowing the free T3 and free T4, plus others. So, I'm going to make an appointment with my fam-doc after the biopsy to get those done, plus re-doing the TSH.

Thanks for all your input, especially you Liz.

Cheers,

-Geoff.

[Lizz7711]

Saw the GI specialist today, and based on the blood tests he highly recommended going forward with the biopsy. So, long story short, I'm booked in for the biopsy next Tuesday.

My only concern with having a positive diagnosis was that it may make me ineligible for certain insurances (travel medical, life, disability, etc.) in future. However, after talking with an insurance broker that I do work for, I'm already screwed because of the blood test anyway. So, based on that, and the fact that they're able to get the biopsy scheduled so quickly, I figured might as well find out what's happening down there.

The GI doc congratulated me on getting the blood test done, because he said if he put me in a room with 100 GI's, only one or two would even suspect celiac disease (and I assume less for generalist doctors, i.e. family physicians). So I felt pretty good about that.

I also managed to get a copy of the blood test results which were sent from my family doctor for the referral. Here are the ones relating to celiac disease:

Gliadin IgA ABS. - 23 (norm. is <19.99)

Gliadin IgG ABS. - 53 (norm. is < 19.99)

Transglutaminase IgA - >100 (norm. is < 19.99)

With regard to the possible hypothyroidism mentioned by Liz, my TSH was 2.84 (norm. is 0.35 - 5.00). But this was from blood work done more than a year ago (Sep. 2006). However, based on the info I've been reading, this doesn't mean much without knowing the free T3 and free T4, plus others. So, I'm going to make an appointment with my fam-doc after the biopsy to get those done, plus re-doing the TSH.

Thanks for all your input, especially you Liz.

Cheers,

-Geoff.

If I was in your shoes i'd probably do the biopsy too...hope it goes well and let us know the results! Since I may still decide to do it too (i've only been gluten-free for 2 months), i'm curious as to what it's like! Kind of alarming his comment about 100 GI's. But I do think the regular med. establishment is starting to catch up with the realities of the limitations of the "classic celiac" case, another 5 years and I really think the whole "celiac disease/gluten sensitivity" issue will be completely redefined.

I guess since i've got the positive blood tests too i'm in the same boat regarding the insurance issue--good to know. I didn't have tTG done though, wish i had. (well i did via stool sample and it was positive there).

With TSH, many doctors now regard anything over 2.5 as suspect for hypothyroid if combined with patient having symptoms.

Good luck with the biopsy!

Liz

[happygirl]

Geoff,

Good luck with your biopsy. Before the procedure, discuss with your GI that you want 'multiple biopsies in multiple locations' taken. Celiac Disease damage can be patchy, so it can be missed by taking one biopsy. Taking more biopsies/multiple places increases the chances of an accurate biopsy.

Your blood tests are certainly indicative of Celiac. However, a biopsy can confirm it, find out the level of damage, look for other problems, etc.

[dbmamaz]

I know it might be different in canada, but I worked for a travel insurance company and first of all, we would cover pre-existing conditions if you bought the insurance within 2 weeks of buying the trip (rather than waiting until the week before the trip, when you already knew u were too sick to travel). And even if you didnt have the pre-ex waiver, you'd still be covered for other things not related to your illness - so while a hospital visit for a severe food reaction might not be covered, a broken leg, the flu, that sort of thing would still have been covered.

[Lizz7711]

Hi Geoff,

How did the biopsy go? Any results back yet? How was the experience?

hoping all is well,

Liz

Saw the GI specialist today, and based on the blood tests he highly recommended going forward with the biopsy. So, long story short, I'm booked in for the biopsy next Tuesday.

My only concern with having a positive diagnosis was that it may make me ineligible for certain insurances (travel medical, life, disability, etc.) in future. However, after talking with an insurance broker that I do work for, I'm already screwed because of the blood test anyway. So, based on that, and the fact that they're able to get the biopsy scheduled so quickly, I figured might as well find out what's happening down there.

The GI doc congratulated me on getting the blood test done, because he said if he put me in a room with 100 GI's, only one or two would even suspect celiac disease (and I assume less for generalist doctors, i.e. family physicians). So I felt pretty good about that.

I also managed to get a copy of the blood test results which were sent from my family doctor for the referral. Here are the ones relating to celiac disease:

Gliadin IgA ABS. - 23 (norm. is <19.99)

Gliadin IgG ABS. - 53 (norm. is < 19.99)

Transglutaminase IgA - >100 (norm. is < 19.99)

With regard to the possible hypothyroidism mentioned by Liz, my TSH was 2.84 (norm. is 0.35 - 5.00). But this was from blood work done more than a year ago (Sep. 2006). However, based on the info I've been reading, this doesn't mean much without knowing the free T3 and free T4, plus others. So, I'm going to make an appointment with my fam-doc after the biopsy to get those done, plus re-doing the TSH.

Thanks for all your input, especially you Liz.

Cheers,

-Geoff.

[Blitz]

How did the biopsy go? Any results back yet? How was the experience?

Thanks for asking... I actually just had it done today. It wasn't all that bad, except my throat is pretty sore... I guess that's to be expected when they're ramming things down there. Mind you, I prefer that to ramming things up the other end (which I've never had done... yet, thankfully).

The GI doc said that just based on the visuals (I thought it was microscopic?), he's pretty sure it'll come back positive. However, the lab results won't be in until Friday, so I'm supposed to call his office next Monday to get the final diagnosis.

But it doesn't really matter, as I already started the gluten-free diet last Tuesday, and am slowly adjusting to it. I haven't bothered cutting out milk yet, as some have suggested, simply because it's too much all at once (besides, I like milk on my cereal... gluten-free that is). However, I am going to ask my family doc to do the test for anti-casein, plus the thyroid/adrenal stuff, during my next appt., which happens to be scheduled for next week.

Thanks for all your support!

-Geoff.

[Blitz]

I know it might be different in canada, but I worked for a travel insurance company and first of all, we would cover pre-existing conditions if you bought the insurance within 2 weeks of buying the trip (rather than waiting until the week before the trip, when you already knew u were too sick to travel). And even if you didnt have the pre-ex waiver, you'd still be covered for other things not related to your illness - so while a hospital visit for a severe food reaction might not be covered, a broken leg, the flu, that sort of thing would still have been covered.

I would assume (ignorantly perhaps) that the rules for this type of insurance would be pretty much the same everywhere. But thanks to your explanation I now know why they always ask when you bought your plane tickets when buying travel insurance. But, since I didn't have any diagnosed pre-existing condition until the recent Celiac Dx, I never had to worry about it before. But this is good information for any future travels, which I'm sure there will be.

Thanks!

-Geoff.

[Blitz]

If I was in your shoes i'd probably do the biopsy too...hope it goes well and let us know the results! Since I may still decide to do it too (i've only been gluten-free for 2 months), i'm curious as to what it's like! Kind of alarming his comment about 100 GI's. But I do think the regular med. establishment is starting to catch up with the realities of the limitations of the "classic celiac" case, another 5 years and I really think the whole "celiac disease/gluten sensitivity" issue will be completely redefined.

My GP is fairly young (probably not much older than me, and I'm 30), so the presumption is that he might be a bit more "up" on this kind of thing than an older doctor would be. The GI specialist is older though, my guess would be 60's, but he seems to know what he's doing, and both my parents have seen him before (for other conditions like ulcerated colitis).

It sure looks as though the whole celiac disease issue is coming to a boiling point, and I suspect you may well be right about it being redefined in the next few years. And frankly it needs to be, because nobody should have to wait 12 years to get diagnosed properly like I did (through 4 different GP's too!).

I guess since i've got the positive blood tests too i'm in the same boat regarding the insurance issue--good to know. I didn't have tTG done though, wish i had. (well i did via stool sample and it was positive there).

The other possibility, as has been mentioned before, is excluding illnesses related to the condition. So you'd still be covered for a heart attack, stroke, breast cancer, etc... but not for intestinal lymphomas and the like.

With TSH, many doctors now regard anything over 2.5 as suspect for hypothyroid if combined with patient having symptoms.

That's good info to know. I'll certainly mention that to my GP when I see him next week.

Cheers,

-Geoff.

[Lizz7711]

Good to hear everything went ok

It is a big change and I can understand not wanting to tackle it all at once with dairy. But for me cutting both out at the same time helped me to not get dependent on all the dairy stuff. I think many celiacs eat lots of dairy because it fills the gap--but then they don't heal because their body hates the casein too! So see how you do...but I'd recommend weaning off dairy as soon as possible. And then they say some people can add it in after healing the intestines for some time. If you're not already, i'd at least switch to organic milk until you decide to go off milk. We use rice milk. Soy milk is also too close in protein structure to casein and gluten so the body oftne has the same problem with it.

good luck and let us know the results, take care,

Liz

Thanks for asking... I actually just had it done today. It wasn't all that bad, except my throat is pretty sore... I guess that's to be expected when they're ramming things down there. Mind you, I prefer that to ramming things up the other end (which I've never had done... yet, thankfully).

The GI doc said that just based on the visuals (I thought it was microscopic?), he's pretty sure it'll come back positive. However, the lab results won't be in until Friday, so I'm supposed to call his office next Monday to get the final diagnosis.

But it doesn't really matter, as I already started the gluten-free diet last Tuesday, and am slowly adjusting to it. I haven't bothered cutting out milk yet, as some have suggested, simply because it's too much all at once (besides, I like milk on my cereal... gluten-free that is). However, I am going to ask my family doc to do the test for anti-casein, plus the thyroid/adrenal stuff, during my next appt., which happens to be scheduled for next week.

Thanks for all your support!

-Geoff.

[Blitz]

Good to hear everything went ok

It is a big change and I can understand not wanting to tackle it all at once with dairy. But for me cutting both out at the same time helped me to not get dependent on all the dairy stuff. I think many celiacs eat lots of dairy because it fills the gap--but then they don't heal because their body hates the casein too! So see how you do...but I'd recommend weaning off dairy as soon as possible. And then they say some people can add it in after healing the intestines for some time. If you're not already, i'd at least switch to organic milk until you decide to go off milk. We use rice milk. Soy milk is also too close in protein structure to casein and gluten so the body oftne has the same problem with it.

good luck and let us know the results, take care,

Liz

Hi Liz,

Actually, I do drink rice milk some of the time, and I have been known to put it on cereal. However, I'm a big tea granny (English upbringing), and I can't stand my Tetley w/o milk. And rice milk just does not work in tea for some reason.

I'm going to ask my GP for the anti-casein test (or whatever it's called), and then hopefully I'll know whether I have to cut that out or not. I'd rather not if I don't have to.

Btw, can you tell me where you read that info about the TSH over 2.5 with symptoms = hypothyroid? I'd like to have something concrete to take to my doctor, in case he rebuffs my request for the additional tests. When I mentioned possible hypothyroid to the GI doc he rejected it saying my TSH was within normal range (0.35 - 5.00). But then again this isn't his area of specialty, so perhaps he just isn't up to date on the developments.

Thanks!

-Geoff.

[Lizz7711]

Hi Liz,

Actually, I do drink rice milk some of the time, and I have been known to put it on cereal. However, I'm a big tea granny (English upbringing), and I can't stand my Tetley w/o milk. And rice milk just does not work in tea for some reason.

I'm going to ask my GP for the anti-casein test (or whatever it's called), and then hopefully I'll know whether I have to cut that out or not. I'd rather not if I don't have to.

Btw, can you tell me where you read that info about the TSH over 2.5 with symptoms = hypothyroid? I'd like to have something concrete to take to my doctor, in case he rebuffs my request for the additional tests. When I mentioned possible hypothyroid to the GI doc he rejected it saying my TSH was within normal range (0.35 - 5.00). But then again this isn't his area of specialty, so perhaps he just isn't up to date on the developments.

Thanks!

-Geoff.

My parents are both Brits as well, so I grew up with tea every morning and afternoon, milk and sugar. I especially remember yummy tea when I'd have it in England at relatives' houses in the real teacups...somehow it tasted better!

But I sort of weaned my self off of tea as I started drinking coffee years ago...then when my mom died of cancer a couple years ago...I decided to wean myself off of coffee. So now I drink mainly green tea (many varieties) with honey every day, coffee maybe once every couple weeks, and regular black tea with rice milk very rarely. It'll never taste as good as the real thing I know!

About the TSH, that is info my doctor told me, but I do know i've also read something about it...i'll try to dig up some info. The website I gave you earlier (stopthethyroidmadness.com) might have that info and maybe reference for it, not sure. As I said before, your symptoms scream of low adrenal function, and even if your thyroid is hypo, you'd want to treat the adrenal issue first--even my holistic doc wasn't real up on that though and I had to ask him for a prescription for low-dose hydrocortisone --I got my info from above website plus some other links/books (Adrenal Fatigue/21st century syndrome by Wilson). The above website also gives some home self-tests you can do to test adrenals, such as looking in a mirror and holding a flashlight across the path of your eyes (not directly at them) and looking at your pupils...they should constict and stay consticted. If they constict and then within a few seconds start fluctuating, trying to dilate, that indicates adrenal fatigue. Another thing to do is take your temp throughout the day and see how much it varies . With hypothyroid, you will have a low body temp, with adrenal fatigue your temp will be low, but it will also be kind of all over and unstable. Another classic adrenal fatigue symptom is feeling dizzy when standing up quickly..it indicates your blood pressure dropping when you stand, where it should be rising. That is something the doc CAN test...he can take your BP sitting, lying down, and then standing. one after the otehr. If it drops by 20 points when standing, you probably have adrenal fatigue.

Once I started treating my adrenals, I retested my TSH and it went from 2.54 to 7.9--clearly hypothyroid. So I think somehow the poor adrenal function was masking the severity of my hypothyroid, and then when the adrenals were taken care of, they hypothyroid became evident.

Like I said, i'll try to find more "reputable " info if I can...when is your appointment?

take care,

Liz

[Blitz]

My parents are both Brits as well, so I grew up with tea every morning and afternoon, milk and sugar. I especially remember yummy tea when I'd have it in England at relatives' houses in the real teacups...somehow it tasted better!

But I sort of weaned my self off of tea as I started drinking coffee years ago...then when my mom died of cancer a couple years ago...I decided to wean myself off of coffee. So now I drink mainly green tea (many varieties) with honey every day, coffee maybe once every couple weeks, and regular black tea with rice milk very rarely. It'll never taste as good as the real thing I know!

About the TSH, that is info my doctor told me, but I do know i've also read something about it...i'll try to dig up some info. The website I gave you earlier (stopthethyroidmadness.com) might have that info and maybe reference for it, not sure. As I said before, your symptoms scream of low adrenal function, and even if your thyroid is hypo, you'd want to treat the adrenal issue first--even my holistic doc wasn't real up on that though and I had to ask him for a prescription for low-dose hydrocortisone --I got my info from above website plus some other links/books (Adrenal Fatigue/21st century syndrome by Wilson). The above website also gives some home self-tests you can do to test adrenals, such as looking in a mirror and holding a flashlight across the path of your eyes (not directly at them) and looking at your pupils...they should constict and stay consticted. If they constict and then within a few seconds start fluctuating, trying to dilate, that indicates adrenal fatigue. Another thing to do is take your temp throughout the day and see how much it varies . With hypothyroid, you will have a low body temp, with adrenal fatigue your temp will be low, but it will also be kind of all over and unstable. Another classic adrenal fatigue symptom is feeling dizzy when standing up quickly..it indicates your blood pressure dropping when you stand, where it should be rising. That is something the doc CAN test...he can take your BP sitting, lying down, and then standing. one after the otehr. If it drops by 20 points when standing, you probably have adrenal fatigue.

Once I started treating my adrenals, I retested my TSH and it went from 2.54 to 7.9--clearly hypothyroid. So I think somehow the poor adrenal function was masking the severity of my hypothyroid, and then when the adrenals were taken care of, they hypothyroid became evident.

Like I said, i'll try to find more "reputable " info if I can...when is your appointment?

Wow, thanks for all the great info. I did take a peek around that website a few weeks back, when you originally mentioned it, but methinks I should go back and review it. Just in my initial perusal now, I noticed there is some mention of the TSH >2.5 + symptomatic = hypo, but it's a bit vague and spread out.

My appointment with my GP is on Wednesday afternoon, so there's no immediate rush. If you can help, that would be much appreciated. And if not, I'll just work with what I've got already. My doctor has been fairly receptive to requests for various tests in the past (that's how we found the celiac in the first place), so I'm hoping that will continue. And hopefully the tests are covered, unlike the celiac panel which cost me $125 out of pocket (money well spent though!).

Thanks again Liz.. you've been a tremendous help!

Cheers,

-Geoff.

[Blitz]

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.