Feeling Faithless

[lushgreen]

Hello All,

I wanted to share my story, which is still unfolding. I'm only sort of new - I was on last summer when I started having a number of varied symptoms and felt that celiac was a strong possibility (you all were incredibly helpful and supportive then). I got tested (through Quest - a mistake, should have done Prometheus) and all numbers were negative.

However, at the same time I did get diagosed with a number of other conditions: autoimmune hypothyroiditis, severe vitamin D deficiency, low vitamin A. I figured I was barking up the wrong tree with celiac and got busy trying to address these other conditions, thinking they were responsible for how lousy I was feeling. I totally stopped thinking about celiac. Over the months, I also ended up getting diagnosed with secondary hyperparathyroidism, reactive hypoglycemia, low cortisol and most recently, GERD (so in short, now my thyroid, pancreas, adrenal, and parathyroid glands have all been implicated as having less than optimal functioning). Labwise, a lot of these things got corrected but I continue to feel terrible and the doctors had no answer.

In the meantime, I kept insisting that there had to be some malabsorption going on that was responsible for the vitamin deficiencies. Since the celiac tests were negative, the doctors' responses were to say they were due to my vegetarian diet (bah!), my dark complexion (I am South Asian), inadequate sunlight - all of which I thought to be bull. My stomach issues were due to IBS or secondary to thyroid dysfunction, according to them. And of course they suggested I get on antidepressants, as clinically there was no reason for me to feel as bad as I was. No one suggested that testing for celiac is highly imperfect and should not be ruled out, or the idea of non-celiac gluten sensitivity, of course. All these months, everyone was quite content treating the symptoms of a bigger picture (a scenario which I know many of you here are all too familiar with).

In desperation, I consulted a nutritionist, who immediately connected the dots (which no one else was willing to do) and insisted I go on a gluten-free diet, recognizing all my difficulties as being autoimmune-related and therefore in her mind, reversible through throwing out the gluten (and dairy and soy), citing the molecular mimicry theory. I was amazed and felt like it was a revelation! Ever since, I have been back on the celiac/gluten horse and determined to have it correctly diagnosed.

To boot, I come from a medical family and knew that I would have to get a confirmed diagnosis to have their support and thus decided to pursue this at the Celiac Disease Center at Columbia, figuring that they were the world experts. The doctor I consulted there right away told me that there was definite malabsorption and that it sounded very much like celiac. She did not make much of the fact that my blood tests for celiac (which was not a complete panel anyway) were negative and insisted on the endoscopy (what I also wanted). I straight off asked how many samples she would be taking - 15 (knowing that that was what was recommended). She said 8. After giving it some thought, I decided to proceed with the endoscopy even though I couldn't really afford it (my insurance will not fully cover it and I'm a grad student). So she does the endoscopy and tells me everything looks normal. I find out from the discharge nurse that she only sent two samples to the lab - 2!! This is a Columbia CDC doctor who is supposed to know better!! For the next couple of days I tried calling the doctor to find out if this was true but I got no response. This was least expected at the world's supposed premier center for celiac. I give up!

So I'm sure the biopsies are going to turn out negative and in essence the doctor has effectively defeated all my months of researching the right doctor, the right diagnostic tests, etc. and it could well turn out to be a complete waste of money! I'm hoping that I'm jumping the gun and the doctor is going to call and it will turn to be a mistake - that she indeed send adequate samples to the lab, but if not, I don't know what I'm going to do. Of course, I could rely on Enterolab, but it's also the principle of it. I wanted to share this - because you will understand the importance of taking multiple samples! If any of you have any suggestions on how to handle it with her if in fact she did not take the required, nor stated, amount of samples, I would really appreciate it. I want to be prepared to talk to her about it.

Thanks so much for reading and letting me vent and thanks in advance for any comments/suggestions!

[Canadian Karen]

Wow, surprise, surprise, another story of doctors who should know better!

My best suggestion to you would be to listen to your instincts..... Even if the results come back negative, it is VERY likely you could have non-celiac gluten intolerance. If you have a positive response to the gluten-free diet, then that is your answer. Of course, if you feel you require "official" documentation for your family to believe you, then Enterolab would be your best bet to get accurate readings of gluten sensitivity....

Give your family a copy of "Dangerous Grains" to read, they won't doubt you after that......

Good Luck!

Hugs.

Karen

[cultureslayer]

If you have a medical family, then you know that doctors are stupid anyway.

If it's really that important to them, just scan your test results and do a little photoshopping. Numbers and normal ranges are only guidelines, not rules. 5% of the population have a "normal" that's not "normal" and many people can have a "normal" test result without really being their "normal." I honestly cannot function normally when my thyroid levels are in the lower half of normal. Since most people would be asking for a padded room and straight jacket with as much armour as I need, I have problems getting my doctor to deal with it when I tell him how much I'm really taking (I have unlimited refills on my script and have been looking at thyroid panel results since high school so I self regulate very well). I think next year I might have a problem getting him to do unlimited refills again .

[lushgreen]

Hi Karen,

Thanks for the response. I know from all your stories that ultimately the proof is going to be in my response to the diet. But I also realize that a response may not be immediate, that it may take months for me to feel a significant difference. And so I guess I really wanted an official diagnosis to keep me going through the giving up of gluten, besides wanting a diagnosis that was accepted by the medical community (in spite of my vexed experiences with doctors). It looks now like I may just have to end up relying on my own conviction - and Enterolab. Somehow, through managing crippling brainfog, I had the foresight to order Enterolab tests and I should be getting the results any day. I hope that at least will offer something. I will post the results as soon as I get them.

I did actually give them Dangerous Grains to read, but they think I am so off the mark with pursuing a celiac diagnosis (I did test negative with Quest after all ), they won't even crack it open!

[Canadian Karen]

It will be really interesting to see your results! Make sure you post them!

By the way, I absolutely LOVE your avatar! Stunningly beautiful........

Hugs.

Karen

[lushgreen]

Sorry, I missed your post - yeah, this whole experience has made for quite a complicated relationship with my family, who have totally old school ideas about celiac - it's a wasting disease, diagnosed in childhood, found only in those of European descent, malabsorption entails weight loss, etc. etc. etc...and therefore I'm crazy to think I could have it!!!

Thanks Karen - I just found the photo and felt it fit my "name" well. It's exactly the kind of place I would like find myself in when the aches, exhaustion and brain malfunction set in.

I will definitely post the results - it's an interesting place to be in - waiting for the results of both which should both come in any day. I am curious to see how they correlate, if at all.

[cultureslayer]

Have you tried Armour thyroid? If you are hypo then some T3 might help. There's also cytomel and thyrolar (a synthetic version of Armour) if you are concerned about the pork origin of armour. It helped me, and every little bit helps when you are in grad school.

One thing I haven't done yet is get a B complex, probiotic, and prebiotic supplements to add to my daily multi. I love sushi and I'll probably have it at least once a week now that I'm off gluten so iodine's not a problem.

[lushgreen]

No, I haven't tried T3 yet, though it has been part of my plan. I have had lousy control since getting diagnosed - hugely frustrating besides the fact that I feel crappy as hell. I have been euthyroid for just a few weeks I think since starting treatment. I've been hypo, then hyper, then hypo again. I've feared the worst - that my thyroid is flailing about as it gets ready to go kaput!

So I've had no resolution of symptoms - the fatigue is maddening. My cold intolerance is the same. My hair is falling out like crazy. My skin is dry and has a snake-like texture on my legs. My eyes and red and dry. I'm ravenously hungry. This is on 50 mcg of Synthroid. I got testing 3 weeks ago when I was on 25 mcg and my TSH was 6.73 (I don't know how we are going to figure out the right dose - when I was taking about 64 mcg., I was hyperthyroid).

I intend to test again in a week, see where my TSH and T3 are at and find a doctor who will give me T3. Yes, it'll have to be either Cytomel or Thyrolar for me as I'm vegetarian and won't take Armour. I would do anything for more energy - I have a dissertation waiting to be written!

It's been tough though - figuring out if my pathetic state of being at any given time is due to gluten, some other food sensitivity, thyroid, low vitamin D, or low blood sugar. Or some other as yet undiagnosed condition!

Probiotics are also on my list to be researched, soon (along with digestive enzymes). I have not heard of prebiotics though.

[cultureslayer]

Prebiotics are more or less fertilizer for the good bacteria in your gut . The one that I've used has been fructo-oligo-sacchrides (sp) or FOS for short.

I eat yogurt, but that's only 1 or 2 types of bacteria so I need to quit being lazy and get a supplement.

[megsylvan2]

Wow, that is certainly disheartening to hear!

I'm with you, Lushgreen. I am one of the ones who wants to pursue diagnosis besides being repeatedly knocked to they ground by doctors. I feel that they/we/I should be able to find a cause and then deal with it. I also feel that diagnosis is critical to appropriate follow-up care, which is critical to my future health and well-being. The CDC (Columbia) is the one who recommends about 10 different items that should be followed after diagnosis. Open Original Shared Link If one is never diagnosed, how will these items ever be managed?

But how disheartening your story is. If we can't find good Celiac knowledge and diagnostics at the Celiac Disease Center - where are we going to find it?

[lushgreen]

Hi megsylvan,

Yes, exactly, if one cannot be put through the correct diagnostic procedures at the CDC, which they theymselves promote, then who can one then turn to? I feel like I have flailing around, looking for a doctor that I can put my trust into - I felt like I had found one when I first met the doctor. It was funny, I walked into center, feeling like I was on hallowed ground, where they knew celiac inside out. I trusted that knowing the high rate of false negatives, they would aggressively put me through diagnostic processes. I felt like I would be able to rest - if they told me I was celiac, I was, if they said I wasn't, I wasn't.

Interestingly, this doctor had never heard of Enterolab. She said that she would ask Dr. Green about it and his response was that it is not at all reliable. Who is one to believe?

[jenvan]

Lushgreen-

I like the pic too--Wish I was there right now...very calming....

So your fam is def agst celiac disease diagnosis--did they have any suggestions or theories for you on what might be wrong ? Just curious.

Have you have your gallbladder, pancreas and liver all cked out? Disease or improper functioning of any of those can also cause malabsorption. Just a thought...

[lushgreen]

No theories from the fam. Celiac doctor offered differentials of tropical sprue and giardiasis. Am confused about the tropical sprue - she says the intestinal damage is the same in tropical and nontropical sprue (celiac), the difference being the absence of antibodies in the former. Wouldn't this make it sero (false) negative celiac then? I need to clarify this with her.

If not either of these, I may also have to undergo a colonoscopy.

I don't think I have been checked out for pancreas, gallbladder or liver. I had a D-xylose test which showed malabsorption and my pancreatic enzymes were checked out which were normal except for slightly elevated amylase. What other tests should be done?

[jenvan]

Open Original Shared Link This link goes thru all the different test for pancreas functioning. Good info.

On the gallbladder and liver--there are ultrasound, imaging tests and some dye tests. This site with 3 pages of info, goes thru different tests: Open Original Shared Link

Open Original Shared Link I guess another experiement to add to the list would be digestive enzymes...this would be playing into the idea of an issue with the pancreas.

You may definitely have a form of gluten intolerance...but unfortunately, at this point, some folks can't manage to get a positive "conventional" diagnosis. So, if you conclude by trial and error that gluten=enemy to you, you may just have to settle for a dietary response vs. conventional confirmation. All the autoimmune issue do make Celiac suspicous... What exactly were your GI symptoms ?

[Lillyth]

In the meantime, I kept insisting that there had to be some malabsorption going on that was responsible for the vitamin deficiencies. Since the celiac tests were negative, the doctors' responses were to say they were due to my vegetarian diet (bah!), my dark complexion (I am South Asian), inadequate sunlight - all of which I thought to be bull.

Do you eat any of that "fake meat"? I was raised on it & found out last year that 99% of the "meatless meat" products contain vital wheat gluten. Which sucks, because one of my guilty pleasures was ToFurkey - which I liked better than regular Turkey.

Just something to look out for...

Lil

[monicaleestudios]

Wow! this thread is very interesting. I just ordered a test from Enterlab myself. I am getting the basic Gluten test done. What tests did you get from them? I came back on the board to ask what the general thought was on this lab. Can someone tell me what they think of them? I am so sympathic about your need to "just a answer!" My husband said if a Gluten Free diet is making me feel better then why am I questioning it? It is the need to be validated-that something is really making you sick! Plus I have a son from my first marriage and I need to know! Having Doctors be dismissive is extremely dishearting. It realyy digs deep into your trust issues. I have wondered what I will do if my test comes back positive and I have to convince my doctors about where I got the results. Please let us know your results and in the meantime take a deep breath and know that someone out there (here) understands your frustration.

[lushgreen]

Someone told me that it could be that the doctor took more than two samples but put them all together in two bottles - I do hope that this is what the nurse was referring to when she said two samples were sent. And then it will turn out that I am unnecessarily freaking out. The results were supposed to be in after Wednesday but thus far I have received no call. Grr...patience is a virtue, I'm trying to tell myself...

Jen, thanks so much for the links, I'm definitely going to speak to my doctor next time I see her about finding out what's going on with the other organs and getting them tested. I've had ultrasounds, an MRI and a CT scan and they have not shown anything. I seem to have the classic gluten intolerance symptoms: severe bloating - I get pretty enormous and it's quite uncomfortable; frequent bowel movements (used to be D, it's now C) with urgency; occasional rectal bleeding; gaseousness feeling completely exhauasted with bad leg pains immediately after eating; lots of fatigue and brain fog. I haven't however noticed any particular connection with gluten consumption - it seems pretty indiscriminate - I get all this no matter what I'm eating, it can even be a glass of juice.

Yeah Lillyth, I was a big seitan fan - my favorite restaurants all have the most yummy seitan (wheat gluten) dishes. Big bummer, especially since I'm going to have to drop soy stuff too.

Monicaleestudios, thanks for the words of support and understanding what is behind this pursuit. I know that a trial at least of going gluten-free is required. But to undertake such a huge undertaking when my diet is anyway restricted, and everything that it is going to entail - all the explaining to other people, wtihout some concrete evidence to back me up, seemed very difficult. Besides, I just feel I need to know through whatever way I can, what is going on in my body. If you have a child, I think it is imperative, as this is a genetic thing. I have mixed feelings about Enterolab but went ahead and ordered the tests, thinking that (my own personal) jury is still out on them but until can figure out what is the most reliable diagnostic way (which may not happen anywhere in the near future), I'd like to know how I stack up in Enterolab terms. Does this make sense? I ordered the full panel - the Gluten Sensitivity Stool and Gene Panel Complete. The casein intolerance test came free with it. It cost $369. In spite of my ambivalence about them, I am anxiously awaiting the results. How long have you been gluten-free? How is it going?

[lushgreen]

Hi to anyone who is following - I tested positive for gluten senstivity through Enterolab. I've posted the results here: Open Original Shared Link

Still waiting for biospy results!

[ms-sillyak-screwed]

Have you tried Armour thyroid? If you are hypo then some T3 might help. There's also cytomel and thyrolar (a synthetic version of Armour) if you are concerned about the pork origin of armour. It helped me, and every little bit helps when you are in grad school.

One thing I haven't done yet is get a B complex, probiotic, and prebiotic supplements to add to my daily multi. I love sushi and I'll probably have it at least once a week now that I'm off gluten so iodine's not a problem.

I took ARMOUR THYROID. It made me feel better then taking LEVOXYL. <That makes me feel like I'm crawling-out-of-my-skin. You are right you can't get a steady balance with your thyroid. I know the feeling. Somewhere I read that there was a class-action suit against the major thyroid manufacture it was a few years ago, and I would assume they've worked their problem out?! But now I know why. I've done some research. It's the dyes used in our thyroid medication is cross contaminated with gluten. Not the pills; but the dyes used in the different doses. However, I can't tolerate ARMOUR because of the pork my symsptoms are I get a sore on my tongue and my mouth. Although I 'feel better' I have had to go to a COMPOUNDING DOC to make the RX. ...And and still searching for the right level.

No, I haven't tried T3 yet, though it has been part of my plan. I have had lousy control since getting diagnosed - hugely frustrating besides the fact that I feel crappy as hell. I have been euthyroid for just a few weeks I think since starting treatment. I've been hypo, then hyper, then hypo again. I've feared the worst - that my thyroid is flailing about as it gets ready to go kaput!

So I've had no resolution of symptoms - the fatigue is maddening. My cold intolerance is the same. My hair is falling out like crazy. My skin is dry and has a snake-like texture on my legs. My eyes and red and dry. I'm ravenously hungry. This is on 50 mcg of Synthroid. I got testing 3 weeks ago when I was on 25 mcg and my TSH was 6.73 (I don't know how we are going to figure out the right dose - when I was taking about 64 mcg., I was hyperthyroid).

I intend to test again in a week, see where my TSH and T3 are at and find a doctor who will give me T3. Yes, it'll have to be either Cytomel or Thyrolar for me as I'm vegetarian and won't take Armour. I would do anything for more energy - I have a dissertation waiting to be written!

It's been tough though - figuring out if my pathetic state of being at any given time is due to gluten, some other food sensitivity, thyroid, low vitamin D, or low blood sugar. Or some other as yet undiagnosed condition!

Probiotics are also on my list to be researched, soon (along with digestive enzymes). I have not heard of prebiotics though.

Probiotics are good. They made me feel better.

[cultureslayer]

However, I can't tolerate ARMOUR because of the pork my symsptoms are I get a sore on my tongue and my mouth. Although I 'feel better' I have had to go to a COMPOUNDING DOC to make the RX. ...And and still searching for the right level

Thyrolar is available by special order at pretty much any pharmacy. IT's the same T4/T3 combo as armour, only it's completely synthetic. It doesn't really have to be refridgerated 24/7 (you can keep it in your purse for a week, so most just take a week's worth out at a time), but most online pharmacies will jack up the price with shipping it on ice, so I'd suggest looking into local special order. I haven't had trouble with Armour so I've stuck with it since it's cheaper.

[ms-sillyak-screwed]

cultureslayer -- THANX FOR THE INFO. I looked up whats in it... I can't do CORN or DAIRY. That might have been why I didn't try it before. And at this stage I stay away from DYES in pills, knowing what I know now. I don't trust these companies anymore.

Thyrolar (generic name Liotrix)

Thyrolar contains triiodothyronine (T3, liothyronine) sodium and tetraiodothyronine (T4 levothyroxine) sodium. Inactive ingredients are calcium phosphate, colloidal silicon dioxide, cornstarch, lactose, magnesium stearate. The following dies are also used:

Thyrolar 1/4 -- FD&C Blue #1 and FD&C Red #40.

Thyrolar 1/2 -- FD&C Red #40 and D&C Yellow #10

Thyrolar 1 -- FD&C Red #40

Thyrolar 2 -- FD&C Blue #1, FD&C Red #40 and D&C Yellow #10

Thyrolar 3, FD&C Red #40 and Yellow #10

[cultureslayer]

That stinks! I didn't know Thyrolar used dyes either.