Preparation for blood testing

[Emanon]

I received papers for celiac blood testing, but this situation increases my anxiety, as gluten functionally incapacitates me completely regardless of any countermeasure efforts. Those prevent me from staring into space for 8 hours, but do not address the fundamental problem; the gluten challenge situation is disabling.

I believe reintroduction of gluten after a period of gluten free produced some event akin to a celiac crisis. #2

I may not precisely recount for you these events due to aforementioned neurological factor; #1

Due to these complications, I hope to know if it is possible to shorten the period beforehand, as, neurological complication is felt so severe, the concept of reaching the testing centre at a prearranged time is a source of anxiety. To say nothing of life responsibilities. Often I'm not even in a condition to buy more glutenous products.

Famdoc advised that if I had a stronger reaction, then perhaps I am more likely to test positive. But I do not want to waste the paper he gave. This is important since I only started on gluten couple of days ago, and contact with him is sporadic. #3

 

So more generally I'm wondering about process in Canada for diagnosis. Ontario province, GTA. The IGA test and possibility of testing in midst of episode, or if I must wait for prolonged period.

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#1 I lost [or experienced crippling reduction in] emotional range, visual/auditory distraction filtering, memory [all factors], cognition, and many other important functions, in an afternoon. This corresponded to period in which I suffered from considerable pain in the region, as well as considerably elevated intensity of auditory noise I suspect reflects immune attack on auditory nerve. Intensity is sometimes not bearable when using hearing protection.

#2 Complete with heart rate, weakness, ragged breathing, etc, confusion. Other symptoms include considerable dehydration [ie; crisis day I drank over 3x daily amount, still dehydrated], and need to introduce electrolytes to counter severe crash. Severe episode of neuropathy, severe weakness, joint problems, etc. Neurological change is most disabling. Due to this combination of factors; I had to spend the rest of the day lying down, to limit heart pain.

I should add that as I lay down, I could perceive gravity effect on blood cells in brain, via sensation of partial starvation.

#3 There is the additional concern that, when I had less inhibited cognition, the situation proved to be of great anxiety [fear of catatonia/"death"], and so I produced poor late impression. I proved uncooperative when I was informed of "long term side effects" justification of withholding medication. I am frankly afraid to write to him now due to level of incapacitation.

[Scott Adams]

To me it sounds like you are 100% sure that gluten is a big problem for you, so I'm not sure why you need to go through with testing to confirm this, because to do the testing you will need to do a gluten challenge for at least 6 weeks, and eat around two slices of wheat bread worth of gluten. If you have such severe reactions, doing a gluten challenge is a bad idea.

[Emanon]

Problems are the following:

Gluten or not I have a persistent immune dysfunction, as well as a mild(er) reaction to presence of food in general

The doctor won't prescribe any medication to treat even the gluten issue w/o diagnosis

The immune dysfunction intensifies whenever my health improves

The gluten makes it significantly temporarily worse.

Points 1&4 make functional life inordinately difficult. Gluten just makes it impossible. 

 

So I had no choice, to consider any treatment, doctor required testing, and disregarded historic use of medication in question.

[Scott Adams]

Understood, but there is not yet a prescription drug treatment for celiac disease, although doctors often prescribe many things to address its symptoms, but only a gluten-free diet will offer true relief.

[Emanon]

For me I historically used various ways to stress my immune system to reduce symptoms.

Afaik, this jives with Prednisone being estimated as highly effective during childhood, but my memory recall is completely shot rn.

Problem is more than simply gluten free, for myself I have a baseline of immune dysfunction, and celiac puts that into overdrive. I did go gluten free but this only provided partial relief.

I have had inexplicable episodes with anti allergens giving stunningly liberating effects. 

On normal dosage; dramatic improvement in brain function, or inexplicably stronger. 

Thus I remember "Fenofexadine" and it's chemical code, since I wrote it once during 2 hour episode of greatness. It's Allegra, yes.

Normally I would commit hours to this/work around since it's not possible.

 

This is also why I could learn to write with opposite hand. My brain could finally get it's act together enough to mirror left-right hand movement, and I can now write with my right. But I can't improve until I tame the neurological again somehow

[Emanon]

Failed to test positive.

Doc finally says that he begins process for GI referral.

After dropping inflammation hard, the bleeding became pretty serious. If I ingest irritants, the excretion will not be visible through the redness of the blood.

Seems like primary problem is ingestion of food.

The color depends on the degree of the irritant. If it's something simple, easy to digest, it is somewhat brighter red. Sort of like red fruit punch.

But if it is challenging or "histamine"? Like nuts the color is "rather dark".

For liquid cases the results is more mild, allowing for observation of more discrete elements (otherwise not possible), by which I refer to some kind of, small masses, something like shredded flesh?

With solids observation is not possible.

The loss has been present in the past, but now I understand where it is going. This is discerned from perceptible sensation of blood loss.

 

While this may pose a symptom of note, I am doubtful of two items

First, that the doctor may refer me in any reasonable amount of time.

Second, that the healthcare system will demonstrate any remote level of competence. Due to recent experience.

[Scott Adams]

Have you been keeping a food diary to record your reaction to various foods. A low histamine diet helps many people, and this article may be helpful, but above all, let your doctors know exactly what is going.

 

[Emanon]

I was tested for the celiac gene, and tested positive, the GI doctor insists on doing a gluten challenge (again), and I've long forgotten everything I wrote and learned about. 

The last test, turned negative, but they were missing a bunch of data [paraphrasing doc] so he wanted it done again.

Progress has been very slow, because of the long time between appointments (a month to the upcoming one), and time to get a referral. Its been exceedingly fortunate that its the winter here, since it tames some particularly dangerous symptoms.

The self care I did helped a lot, some symptoms are much better, some others, like what I suspect is immune mediated symptoms, and I think kidney pain, got a lot worse. 

The urine (on the kidney? point) is particularly foamy (layers of foam), particular nasty odour, I need electrolyte powder to maintain it at a bearable level.

When they did an endoscopy they mentioned only finding hemorrhoids, which surprised me, since it didn't occur to me [symptom wise]. I'm told there doesn't seem to be anything, so my SI is healthy. 

It may have healed significantly over the last few months, at least symptoms like unbearable flatulence have drastically improved.

I don't want to sound insane, but it is sufficiently unbearable, which is something I sanitized from the post. I won't disagree with the doc on the test, because I'm kind of done.

And if I wasn't, they wouldn't treat me, so whatever.

I tried ordering something in a moment of 'particular concern' but its well over 2 months late, and Canadian customs hasn't even looked at it over 3 weeks in the country.

[Scott Adams]

If you want to go the formal diagnosis route, more info is below, but it sounds like you may also want to avoid a gluten challenge and just go gluten-free.  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy:

  Quote

"...in order to properly diagnose celiac disease based on serology and duodenal histology, doctors need patients to be on gluten-containing diets, even if they are causing symptoms, and this is called a "gluten challenge."

• Eat gluten prior to celiac disease blood tests: The amount and length of time can vary, but is somewhere between 2 slices of wheat bread daily for 6-8 weeks and 1/2 slice of wheat bread or 1 wheat cracker for 12 weeks 12 weeks;
• Eat gluten prior to the endoscopic biopsy procedure: 2 slices of wheat bread daily for at least 2 weeks;

Expand Quote  

and this recent study recommends 4-6 slices of wheat bread per day:

 

 

[Emanon]

Symptoms don't go away if I go gluten free, they do become milder. But its not even beginning to be sustainable.

It not being treated is out of the question. On my medical record I was treated for it as a child with Prednisone.

I did not eat any/significant gluten in the months leading up to the endoscopy.

You can be NCGS with the genetic marker for celiac disease?

[Scott Adams]

If you were not eating gluten before the endoscopy for celiac disease, then your results could be a false negative--so you may have celiac disease, especially if you have the genetic markers, and symptoms when you eat gluten (although many people don't have obvious symptoms).

If your symptoms get milder when you go gluten-free it can be another indication of either celiac disease or non-celiac gluten sensitivity.

Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

[Emanon]

Like I have repeatedly stated they do not ever go away. I fundamentally cannot agree with your repeated posting of NCGS. Perhaps it is a fad but I'm far from being in the mood.

My doctor ordered IGA tests twice now and I haven't tested positive. The experience is completely savage. He hasn't ordered EMA/IGG and I haven't seen the results myself.

I understand that you have been deeply invested in providing knowledge that you can find in under 30s on pubmed. But perhaps you could have contributed say, alternative test options.

 

"Don't do the gluten challenge", "just wait", if it was so comfortable then why am I so motivated to do the tests? I don't care if I die painfully, it would literally hurt less. And I especially won't have to listen to this.

Whatever it's not any use, this is just you, you can't do better.

[Scott Adams]

I'm not sure what you mean by "I understand that you have been deeply invested in providing knowledge that you can find in under 30s on pubmed" as the articles I've shared with you were written for Celiac.com. I've also not discouraged you from doing a gluten challenge, but have merely mentioned that if you do get re-tested you would need to do one--it's your call if you want to do that. NCGS is a real condition, and not a fad, and the issue with it presently is that researchers haven't figured out a way to screen for it (some claim to be able to detect it with stool testing, but there is no consensus on this).