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"Skeptical" doctors?


moleface

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moleface Explorer
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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Ennis-TX Grand Master
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.

Posterboy Mentor

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

cyclinglady Grand Master
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

Posterboy Mentor

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/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,

moleface Explorer
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.

moleface Explorer
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/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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GFinDC Veteran
(edited)

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
Posterboy Mentor
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/celiac-disease/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,

  • 3 months later...
Alaskaguy Enthusiast

Moleface, I have profound respect and sympathy for you in what you what through with the medical industry (yes, it is an industry).

I had two different and unrelated health problems back in the 1970s and 1980s, for which I visited a number of different doctors and hospitals.  Ironically, the one that was gastrointestinal in nature, which I now strongly believe was celiac disease, went completely undiagnosed --- even after spending almost a week in the hospital being subjected to almost every test under the sun available at that time.  And the other, a rare skin condition that may or may not have been related to celiac disease, aquagenic urticaria, when undiagnosed and pooh-poohed by a number of different doctors, who just dismissed it as several different conditions that it patently was not.

I am convinced that many if not most doctors 1) truly do not care about their patients, or even see them as sentient beings equal to themselves, and 2) are just as prone, if not more so, to making snap judgements and quick assumptions as the average person.  Overall, I have very, very little respect for doctors, and for the medical profession in general.

  • 3 weeks later...
moleface Explorer
On 3/18/2019 at 11:15 PM, Alaskaguy said:

Moleface, I have profound respect and sympathy for you in what you what through with the medical industry (yes, it is an industry).

I had two different and unrelated health problems back in the 1970s and 1980s, for which I visited a number of different doctors and hospitals.  Ironically, the one that was gastrointestinal in nature, which I now strongly believe was celiac disease, went completely undiagnosed --- even after spending almost a week in the hospital being subjected to almost every test under the sun available at that time.  And the other, a rare skin condition that may or may not have been related to celiac disease, aquagenic urticaria, when undiagnosed and pooh-poohed by a number of different doctors, who just dismissed it as several different conditions that it patently was not.

I am convinced that many if not most doctors 1) truly do not care about their patients, or even see them as sentient beings equal to themselves, and 2) are just as prone, if not more so, to making snap judgements and quick assumptions as the average person.  Overall, I have very, very little respect for doctors, and for the medical profession in general.

I saw that you'd replied awhile back, but I've just been avoiding thinking about this issue lately, for the sake of my own sanity. 

I'm sorry you've gone through that. I used to be close with someone in the medical field, and the impression I got from behind-the-scenes stories is that the medical system is rife with errors, just like any other profession. If a plumber messes something up, at worst you're dealing with a flooded floor or a leaky faucet. A fast food worker might screw up your lunch by forgetting to omit pickles, or by giving you the wrong soft drink. With doctors, their errors can literally kill people. 

At first, I thought I just happened to get incompetent doctors through sheer luck of the draw. But the more experience I had with the medical industry, the more I realized that my experiences were business as usual and weren't particularly notable cases of malpractice.

I think the godlike reverence that society puts on doctors is part of the problem. The impression I got when I disagreed with most doctors was that I was a mere peasant who dared to question the all-knowing authority of an elevated class of life-saving geniuses. Even the most well-meaning person can easily get sucked into this sort of thinking, and drug companies exploit the narcissism of the profession by sending attractive drug reps to take them to lavish dinners.

Compound that sort of attitude with the fact that "gluten free" is one of the top fad diet diets sweeping the nation, and it makes sense that no doctor will believe me. It's incredibly frustrating though. Like I mentioned in an earlier post, it would be understandable if a doctor wasn't willing to accept a patient's subjective descriptions of vague gastro symptoms, but it boggles my mind that my set of very distinct symptoms is also dismissed. After a lifetime of healthy teeth and meticulous dental care, I rapidly lost the enamel on most of my teeth in a specific pattern that's associated with celiac disease - grooves at the tops of the teeth, developing on parallel teeth. I have recurring iritis, which one doctor called one of the worst cases he'd ever seen. When I was still eating gluten, I went down to 130 pounds at 6'1" while on a 5000 calorie a day diet. When I ate gluten for ten days last winter to prepare myself to ask for another blood test, I immediately bloated up 2 pants sizes and then developed iritis. On top of all that, I have a positive celiac blood test. I'm not sure what else these people want from me. 

I'm at the point where I just try not to think about this stuff anymore. It's too infuriating for me to even deal with anymore. I legitimately hate doctors now, and it kills me that I'm forced to deal with them whenever I get iritis in the future. It's either that, or sustain permanent eye damage, and I'm willing to grit my teeth and deal with a doctor to avoid that... for now, at least. I'm getting to the point where I don't even want to go to doctors for that. Too bad prednisone eye drops aren't available without a prescription.

  • 1 year later...
Ouchybelly27 Rookie

Hi moleface,

 

I know that the original post is old but I wanted to suggest finding a functional doctor. I have had very similar experiences when I met with doctors and it’s frustrating and discouraging. Apparently the functional medicine doctors treat the body as a whole, they spend more time with patients than traditional doctors, and they actually listen to patients concerns. The only downside is that they normally do not accept insurance and out of pocket cost can be very expensive. 

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    • Wheatwacked
      Many of the symptoms, there are over 200, associated with celiac disease and NCGS are vitamin and mineral deficiencies caused by small intestine damage in the case of celiac disease and food avoidance and the poor nutrittion of the Modern American Diet (MAD) I used to turn the heat on even at 78 degrees.  The 600 mcg of Liquid Iodine helped.  Also good for hair, nails, skin and brain fog.  Another good thing for brain fog is phosphatyl choline.  It is essentil for acetylcholine- a brain chemical. I have familial hyperlipdemia and instead of a statin I got a prescription for Nicotinic Acid, 2000 mg a day.  I was already taking 500 mg a day and was really surprised when my HDL when up to  44 and I began sleeping better and my legs and back are getting more flexible.  In addition after the first few doses of itchiness I get a warm fuzzy feeling Raising your vitamin D is crucial.  Low vitamin D allows the immune system to run amuck. intermittent bouts of fatigue, chills/cold intolerance, and shortness of breath/air hunger (sometimes feels like a hollowness in my chest, hard to describe).  Look at Thiamin deficiency. consistently ran hot, was always cranking the a/c, to someone who wears a down vest.  Any combination of deficiencies in B1, B2, B3, B5, choline and Iodine can cause this.  Likely all of them. After a lifetime of mouthbreathing GFD cleared my sinuses.  Post nasal drip is my first symptom of cross contamination nowaday.  
    • Wheatwacked
      If you mean continueing on Gluten Free my answer is yes.  She showed significant improvement in her behavior and that translates to a happy family.  Do get her tested as sooon as you can.  You might want to investigate genetic testing for Celiac Disease.  Children recover more quickly than adults.  It took my son about 6 months on Nutramigen before going to regular food, gluten free.  Blood tests are not always accurate in very young children. You may be advised to see a gastroenterologist instead of relying on blood tests results. Logic: She is better off gluten than before.  Wheat flour has no nutritional value and has an omega 6: omega 3 ratio of 22:1.  Our bodies do better at 3:1.  Omega 6 causes inflammation. When my son was diagnosed, back in 1976, his doctor recommended my wife and I also go gluten free.  We declined and lived to regret it.  I started GFD at 63 and have spent the last 10 years undoing the damage, some of my symptons went all the way back to my childhood and things I lived with all my life got better.
    • Wheatwacked
      Hi @Nicbent35,             When my son was diagnosed with Celiac Disease when he was weaned, so I understand your frustration.       With improvement so dramatic, it cannot be a coincedence. Get her to the doctor and tell the story and insist on testing.  In the meantime, though, continue on GFD.  Her health is more important than convincing a doctor.  Bring videos of her behaviors if you can.  Even if the blood tests and biopsy prove negative, that is part of the diagnosis process for NCGS and later when she is recovered you can always do a Gluten Challenge.      This is an important time in her developement.  Celiac Disease causes malabsorption syndrome, leading to malnutrition, regardles of what she eats.  Though NCGS may not cause malabsorption, it will affect food choices which can lead to malnutrition.  There may be benifits that an official diagnosis may have, but they don't trump a healthy child.      Get her healthy, then worry about validation later.  Celiac Disease is difficult to diagnosed, especially in children, because doctors look for antibodies in the blood and young children have immature immune systems.  Also you don't mention any gastrologic symtoms and celiac disease is traditionally considered gastrolic only.  Not true.  There are over 200 symptom that celiac disease and the accompaning malnutrion mimics or causes that often causes misdiagnosis and delay in recovery. While at the doctors, ask them about vitamin D deficiency and Iodine deficiency in particular. Milk being the primary source of iodine in the diet, but concerns exist regarding the lower iodine content in organic milk and reduced milk consumption in certain demographics.  Vitamin D deficiency is 40% of the industrialized population and a recent study in the Great Britain showed a wopping 60%, beaten only by some areas of Canada at 70%. And B1, B2, B3, B5 and B6.  Deficiencies in these are common in untreated Celiac Disease and they affect energy production. Are You Confused About Your Celiac Disease Lab Results?
    • knitty kitty
      @plumbago, Are you taking any folate with your B12?   Folate helps regulate HDL levels.  You may try taking a methylfolate supplement with your B12.   If there's a folate deficiency because you aren't absorbing sufficient folate, or have the MThF mutation causing a functional folate deficiency (methylfolate trap), you can have a functional B12 deficiency despite supplementing, resulting in HDL levels not getting regulated, but running high or low.   Pushing the envelope in explanations, too. P. S. Are you taking a B Complex?  Folate and B12 Cobalamine need enzymes made from B6 Pyridoxine's interaction with Thiamine, and B2 Riboflavin's interaction with Thiamine.  Is your Vitamin D low?
    • Nicbent35
      Thank you for all that helpful info, does that mean it’s not a good idea to do what I’m doing? Or since it’s only been a week should I see if I could get her tested now? Would it show up still since it hasn’t been long if they tested her?
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