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17 hours ago, cyclinglady said:

While you may indeed have celiac disease, you could have Crohn’s too.    Damage can be out of reach from both scopes.  My niece was actually diagnosed with Crohn’s by a pill camera.   Crohn’s can and does go into remission for years without treatment.  Eye and joint issues are also linked with Crohn’s.  

The gluten-free diet can not hurt you.  My own hubby went gluten free 18 years ago.  Does he have celiac disease?  We will never know as he does not want to do a challenge.  But doctors have been supportive.  He did get well though and I am concerned that you are still struggling.  It may not just be celiac disease.  

Finally, keep all your medical records.  Every single little lab result, reports, whatever.  Easy to get even from an ER visit.  You might have to pay for them, but it is well worth it.

I hope you feel better soon.  

 

Thanks for the advice!

Honestly, I was always skeptical of the Crohn's diagnosis, and I originally figured that the gastro doctor had misdiagnosed Celiac. I started to entertain the possibility of both once my symptoms continued despite being gluten-free, but in retrospect I think I was getting gluten from cross-contamination. I stopped getting iritis and other inflammation for a couple years after going gluten-free, then the symptoms returned with a vengeance once I moved in with a roommate.

I'm quite sure that I have Celiac disease though - I'd literally bet my life on it without hesitation. I don't underestimate the power of the mind and the placebo effect, but what originally convinced me was the fact that I got severe "gluten withdrawal" when I first cut gluten out of my diet, which was a phenomenon I didn't even know about at the time. If I were just easily suggestible or whatever, I'd have immediately felt better instead of far worse.

About medical records - I started bringing copies of the iritis diagnosis and the positive blood test with me to doctor visits, but it didn't seem to dissuade doctors who'd already made up their mind that I was a hypochondriac. I'm debating whether or not to provide my current GP with my Enterolab results, since this gastroenterologist refused to accept them as evidence that I'm gluten intolerant. They told me that the mouth sores, tooth enamel loss, recurring iritis, intestinal ulcers and anemia were all coincidental and can "occur for many different reasons". Sure.

At this point, I think I'm through with doctors. I'll go whenever I get iritis, since that can cause permanent vision loss, but I can't deal with this dismissive attitude anymore. I used to be comfortable talking to doctors and could clearly state my case, but after quite a few bad experiences, I now get really nervous and flustered before any visit. When the nurse checked my blood pressure last time, it read as 160 over 100, which just makes me look even more like a nervous wreck hypochondriac.

At least my intestines healed up and I'm no longer anemic. That's definitely great news.

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2 hours ago, moleface said:

and now he's into the keto diet, an even bigger fad that's not even associated with a legitimate disease.

LOL I learned about keto from someone else that suffers from Ulcerative Colitis and how it helped, I found back then my UC was flaring to carbs/sugars and adopted a modified keto/atkins diet and it fixed many other issues. Again I modified it to a plant based version of fats and a bit higher fiber to prevent backups but it can be useful for some. But everyone is different....BUT THEN THE IRONY, your family member is keto...keto is no gluten....he might feel better because he also has the genetic celiac and is unknowingly treating it or in denial.

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Moleface,

This is for your teach issue(s).

See Ennis_Tx blog post.

https://www.celiac.com/blogs/entry/2579-breaking-teeth/

and what other things people have done to help themselves including myself and desperately saved lady. see her blog post below.

https://www.celiac.com/blogs/entry/2583-when-all-else-fails-these-solved-my-health-problems/

I found treating my low stomach acid helped me tremendously.

https://www.celiac.com/blogs/entry/2106-is-ncgs-andor-celiac-disease-really-low-stomach-acid-misdiagnosed/

Maybe it will help you. . .maybe it won't but I find most doctor's skip over testing our stomach acid directly too the small intestine.

But you won't know if you don't test.

There are several easy self/home test to guide your doctor in looking for this condition (Low stomach acid going undiagnosed/misdiagnosed) to confirm your/a suspicion.

probably the best well known is the "baking soda test".

This article explains how to do it properly.

https://drjockers.com/5-ways-test-stomach-acid-levels/

I like the BeatineHCL (Powdered stomach acid) challenge personallly ... but it is a little harder to do. 

First you have to go buy it. .. if you can etc.

Then you have to be certain to take the BetHCL always with a meal always with a couple glasses of water so as to activate the powdered stomach acid.

But it is very doable if you study up on it some.

I suggest start with more BetHCL (3 or 4 capsules) and adjust downward as needed to get your "warm toasty" feeling with your meals a sign your powdered (BetHCL) is activated by the water (or tea if you prefer) you remembered to take with the capsules etc.

And you probably already have baking soda in your house so it is much easier to accomplish at home.

Both are complimentary tests one will usually confirm the results of the other.

I hope this is helpful but it is not medical advice.

"Consider what I say; and the Lord give thee understanding in all things"

2 Timothy 2:7

Posterboy by the Grace of God

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3 hours ago, moleface said:

 

Ironically, I have a family member who adamantly refuses to believe I could be celiac, even after the positive blood test and all the other evidence (he insisted that I lost my tooth enamel from stress), and now he's into the keto diet, an even bigger fad that's not even associated with a legitimate disease.

The Keto diet was developed about 100 years ago to treat epilepsy before medications were developed.  It is also pretty good at controlling blood sugar for diabetics. So, I would not say it is a fad diet.  

https://www.news-medical.net/health/History-of-the-Ketogenic-Diet.aspx

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Too Moleface and your problem with Skeptical Doctor's.

I cant' say this is typical (or don't want to say it) but it is a common horror story.

I never can get what I want to say all in one post.

Celiac' can be a great mimicker of other diseases so it is important they find the right cause diagnosis (whatever that is)?

And why other diseases must be ruled out first?

See this House MD episode on Celiac disease if you have seen it.

At one point they think celiac disease could be Pellagra before ruling it out along with many other possible diseases.

So it is not easy being a doctor but I and other's feel your pain. .... we all have had long journeys to our celiac diagnosis!

sometimes there are pit stops and sometime there are potholes along the way but we persist till the doctor's get the right diagnosis?

Decision trees are great if the right decisions are made along the way . ... if at any point in your journey the doctor takes a wrong path we often end up at (figurative) medical dead end?

Instead of going off the cuff . . .. and believing the patient (a radical concept I admit) doctor's have to answer to medical diagnostic procedures/process and if he/she doesn't often or can't he/she will lose their license.

I wish it was easier for the doctor' and the patients to work together in their diagnosis . ... but essentially if the doctor' comes to  a dead end along the way you can become stuck for a while until more test tell him where he/she/they went wrong. . . .and more test's take time many celiac's (as you know and have pointed out well don't have).

see this IBS study that turns out aprox. 84 of IBS patients in time turn out to be really NCGS patients instead.

https://www.celiac.com/articles.html/celiac-disease-amp-related-diseases-and-disorders/irritable-bowel-syndrome-and-celiac-disease/large-number-of-irritable-bowel-syndrome-patients-sensitive-to-gluten-r3442/

but only more tests (and time) can tell the doctor's often where they have gone wrong.

I am not defending them . ..... I waited 30+ years myself to receive  a Celiac diagnosis but I am not attacking them either.

I am blessed to have found a doctor who already had  a patient "train" them on what to look for and was happy to serology (blood) diagnose me.

Some time's you have to educate your doctor about celiac disease and other times you have to find one already educated on celiac/NCGS disease.

Good luck and God speed on your continued journey I only know treating my low stomach acid being misdiagnosed/undiagnosed properly helped me/my GI problems tremendously.

Remember **** This is not medical advice and should not be considered such. I only know it helped me!

2 Timothy 2:7 "Consider what I say; and the Lord give thee understanding in all things" this included.

Posterboy by the Grace of God,

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21 hours ago, Ennis_TX said:

LOL I learned about keto from someone else that suffers from Ulcerative Colitis and how it helped, I found back then my UC was flaring to carbs/sugars and adopted a modified keto/atkins diet and it fixed many other issues. Again I modified it to a plant based version of fats and a bit higher fiber to prevent backups but it can be useful for some. But everyone is different....BUT THEN THE IRONY, your family member is keto...keto is no gluten....he might feel better because he also has the genetic celiac and is unknowingly treating it or in denial.

Oh, I know that the ketogenic diet is a good treatment for some conditions, mostly due to eliminating carbs. Apparently it does wonders for diabetes.

Still though, I can't help but scoff at my brother for buying into the biggest fad diet currently sweeping the nation. Don't get me wrong, when I call it a "fad", I'm not discounting it entirely - gluten-free is most certainly a fad diet as well, even though it also treats a legitimate condition.

My brother is a huge Joe Rogan fan and all his lifestyle choices are dictated by WWJRD. Rogan's a huge proponent of the keto diet. After writing off all my symptoms as wackjob hypochondria for years, insisting that my rapidly deteriorating meth-mouth teeth were caused by "stress", plus telling me "Of course you have autoimmune problems! Don't you know that stress weakens the immune system?" (nevermind that autoimmune disorders don't have anything to do with having a weak immune system), he's now buying into the biggest bro-science diet craze around. Gross.

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21 hours ago, Posterboy said:

Too Moleface and your problem with Skeptical Doctor's.

I cant' say this is typical (or don't want to say it) but it is a common horror story.

I never can get what I want to say all in one post.

Celiac' can be a great mimicker of other diseases so it is important they find the right cause diagnosis (whatever that is)?

And why other diseases must be ruled out first?

See this House MD episode on Celiac disease if you have seen it.

At one point they think celiac disease could be Pellagra before ruling it out along with many other possible diseases.

So it is not easy being a doctor but I and other's feel your pain. .... we all have had long journeys to our celiac diagnosis!

sometimes there are pit stops and sometime there are potholes along the way but we persist till the doctor's get the right diagnosis?

Decision trees are great if the right decisions are made along the way . ... if at any point in your journey the doctor takes a wrong path we often end up at (figurative) medical dead end?

Instead of going off the cuff . . .. and believing the patient (a radical concept I admit) doctor's have to answer to medical diagnostic procedures/process and if he/she doesn't often or can't he/she will lose their license.

I wish it was easier for the doctor' and the patients to work together in their diagnosis . ... but essentially if the doctor' comes to  a dead end along the way you can become stuck for a while until more test tell him where he/she/they went wrong. . . .and more test's take time many celiac's (as you know and have pointed out well don't have).

see this IBS study that turns out aprox. 84 of IBS patients in time turn out to be really NCGS patients instead.

https://www.celiac.com/articles.html/celiac-disease-amp-related-diseases-and-disorders/irritable-bowel-syndrome-and-celiac-disease/large-number-of-irritable-bowel-syndrome-patients-sensitive-to-gluten-r3442/

but only more tests (and time) can tell the doctor's often where they have gone wrong.

I am not defending them . ..... I waited 30+ years myself to receive  a Celiac diagnosis but I am not attacking them either.

I am blessed to have found a doctor who already had  a patient "train" them on what to look for and was happy to serology (blood) diagnose me.

Some time's you have to educate your doctor about celiac disease and other times you have to find one already educated on celiac/NCGS disease.

Good luck and God speed on your continued journey I only know treating my low stomach acid being misdiagnosed/undiagnosed properly helped me/my GI problems tremendously.

Remember **** This is not medical advice and should not be considered such. I only know it helped me!

2 Timothy 2:7 "Consider what I say; and the Lord give thee understanding in all things" this included.

Posterboy by the Grace of God,

Thanks for the reply!

I try not to be too harsh with doctors, but I can't help it when I'm so deeply frustrated. I went from peak health and daily running to suddenly feeling like death 247. I rapidly lost enamel on all my teeth, and got recurring iritis bad enough in my right eye that I lost around 1/3 of the vision in that eye. I'd understand doctors being dismissive if I were just presenting ambiguous, subjective symptoms, but I don't see why they're so skeptical when my body is under attack like this.

Plus I developed benign tumors on my neck when I was at my sickest, and though the biopsy was negative, the doctor told me the lymph node with the growth was swollen. I asked what could cause that, and he just said it's "reactive" and wouldn't elaborate further. I developed a marble-sized tumor on my lymph node within a few months of losing the enamel on all my bottom teeth. The surgeons did an ultrasound on my neck before removing the growth, and informed me that I also have nodes on my thyroid gland. These are textbook autoimmune problems. From what I understand, this means my thyroid is being attacked by my immune system.

The worst part is that some doctors attribute all my y health problems to "lifestyle", when I barely ever drink alcohol (maybe 2x a year), I barely ever eat processed foods, I drink a gallon of water a day, I take countless anti-inflammatory supplements, etc. I live a gray joyless life and only eat to stay alive at this point, so I resent the implication that I'm living some destructive hedonistic lifestyle. I didn't just adopt these changes after getting sick - I was already living like this for years before I'd ever gotten overt celiac symptoms.

As for the issue of finding the correct diagnosis, I'm 100% certain that I'm gluten intolerant. Besides the physical evidence, I have a confluence of very specific symptoms that aren't attributed to any other disease. The tooth enamel was the dead giveaway for me. Plus whenever I accidentally get contaminated with gluten, my autoimmune problems return with a vengeance, even when I wasn't even aware that I'd been ingesting gluten. Last time this happened, I'd been eating salt and vinegar chips labeled "gluten free" that turned out to contain malt vinegar powder. My teeth started hurting to the point where I could barely brush them, I got iritis, my hands swelled up, and my stomach bloated. I understand that doctors can't just take the patient's word on completely subjective symptoms like gastrointestinal distress, but my issues are mostly autoimmune. I'm not sure how the power of suggestion could make my stomach bloat up 2 pants sizes over the span of less than two weeks, or cause my immune system to viciously attack my eye, or make my teeth lose more enamel.

Hopefully I was right all along, and the original doctor had just misdiagnosed Celiac as Crohn's. I'd assumed that from the start. At the very least, we do know that ONE of these specialists is horribly wrong, which just proves that a doctor's opinion should be taken with a massive pile of salt.

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I think you are on the right track too.  Regardless of doctors opinions. you can choose to eat gluten-free if you want to.  They may have lots of initials after their names and big bank accounts, but they don't control your diet.

It's not unusual for people to continue having symptoms for months after going gluten-free.  But don't let that discourage you, it can turn around at any time.  A whole foods diet is a good way to go and easier to manage.  Avoiding dairy may help symptoms also.

The main thing is to stick with the gluten-free diet and avoid cross contamination.  You also may want to try some supplements like vitamin D and B complex.  Vitamin D is important if you are avoiding dairy.

The tooth enamel defect is a classic celiac sign.

Edited by GFinDC

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On 12/1/2018 at 4:16 PM, moleface said:

I try not to be too harsh with doctors, but I can't help it when I'm so deeply frustrated.

Moleface,

Be your own best advocate!  NO one else will or can be! as a good an advocate for yourself can as you can BE!

On 12/1/2018 at 4:16 PM, moleface said:

At the very least, we do know that ONE of these specialists is horribly wrong, which just proves that a doctor's opinion should be taken with a massive pile of salt.

I don't assume people wrong at the outset but what I do set out to do is to CONFIRM! they are right?

If they/you are a reasonable person they will/can arrive (with some detective work ok a lot of detective work sometimes) arrive with at least a 50/50 odds of  being in the ball park.

Of a similar disease like NCGS/IBS, Chrons, UC etc. .....

So the doctor's choose between the two? right!

But what if neither choose is right? then you are at a medical dead end? Right unless the doctor's retrace their steps (or the patients usually) right?

Go back and retrace your steps is my best advice too you!

I found they jumped over low/NO stomach acid in my case!

See this study entitled "Use of Proton Pump Inhibitors and Subsequent Risk of Celiac Disease"  about how use of PPIs which triggers low stomach acid can lead to IgE triggered autoimmune reactions

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3947159/

the link to slow stomach acid has recently been brought to the forefront from this recent study about Baking Soda switching the bodies immune response from "infammatory (auto-immune) to antinflammatory"

https://www.medicalnewstoday.com/articles/321624.php

does this mean it will put your celiac into remission . .. .probably not.

But raising your stomach to below a pH of 4.0 might help control the auto-immune reaction.

quoting from the use of PPIs they say

"PPIs are the most effective medications available for inhibiting gastric acid production. In patients chronically taking conventional-dose PPI therapy, gastric pH rises to levels >4.0 for approximately 50% of the day.28 With the higher doses that often are prescribed in clinical practice, gastric pH levels can remain >4.0 for more than 80% of the day.29 At these pH levels, there can be little peptic digestion of a number of food antigens that normally would be partially degraded in the stomach..PPIs also increase gastric mucosal permeability, which might enable those undegraded food antigens to be absorbed and exposed to cells that elicit an immunological response.11,12"

That is great but I don't take PPIs you say?

Stress can trigger the same results in the body (low stomach acid) especially in those genectically predisposed like celiac's who do not handle stress well!

https://www.celiac.com/articles.html/celiac-disease-gluten-intolerance-research/stress-common-before-celiac-diagnosis-r2930/

and why stress in in one's life can  make your symptom's "blow up" for seemingly for no other reason.

On 12/1/2018 at 4:16 PM, moleface said:

I'm not sure how the power of suggestion could make my stomach bloat up 2 pants sizes over the span of less than two weeks,

bloating can be a sign of low stomach acid!

a bowel transit test can confirm this hypothesis then it becomes a "working" theory.

Here is the "official" medical way to do it and what it is.

https://www.webmd.com/a-to-z-guides/bowel-transit-time-test#2

and I can almost bet this never happened.

and here is the "home test" you can do to confirm these suspicions for yourself.

https://ndnr.com/gastrointestinal/using-the-transit-time-test-to-assess-patients-bowel-function/

then you will just have to get another test from the doctor to "offically' diagnose you.

but good luck on getting a "skeptical" doctor' to do anything you suggest. ... I have the same problems with my type II diabetes.  I took chromium to help control my blood sugar. . . if my insulin was not being used (impaired) then what about my body was missing?
I didn't need insulin I just neeeded to better use the insulin my body was already producing.

Like you need MORE stomach acid not less!

go back and  retrace/reread my previous response and read all the links I put in.

https://www.celiac.com/blogs/entry/2106-is-ncgs-andor-celiac-disease-really-low-stomach-acid-misdiagnosed/

what do you do when have receive a "bad" diagnosis and your prognosis is poor (or you loose your keys) . . .. you go back and retract your steps right?

YOU are right to question ONE of them is wrong . .. but what if both of them are wrong?

And the decision tree did not (adequately) consider your Stomach Acid levels (FIRST).

First things first Right?

The stomach comes first and should be first ruled out as a possible cause of your GI system problems.

see also this thread that summarizes that point well.

https://www.celiac.com/forums/topic/121915-the-way-it-really-is/

I must stop for now but I I hope this is helpful and as always ..... this is not medical advice!

But when we retrace our steps we often find our "keys" to health and then we can move forward with our lives again.

If you have had EBV virus at any time in your life I would also read this thread.

https://www.celiac.com/forums/topic/122593-tonsillectomy/?tab=comments#comment-997652

EBV has now been linked to possibly triggering an auto-immune reaction including and up to (possibly) celiac disease!

Again this is not medical advice but I  hope it is helpful.

I first saw trents quote this but it is appropriate here.

"just as bread needs a little leavening to rise, a dash of contrarianism is often useful to see things clearly"

I am the contrarian (in a way) of thinking of not What is happening but WHY is this happening. .. but it has helped me too see things clearly!

Salmon swim against the stream to reproduce but they are successful not because they swim with the current but against it.

It is against the medical current to talk about stomach acid FIRST but I believe it is the right answer.

I think it has made ALL the difference too me!

And it I hope it be will help to you too!

Good luck and God speed on your continued journey.

As always “Consider what I say; and the Lord give thee understanding in all things” this included.

2 Timothy 2:7

Posterboy by the grace of God,

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