Saw The Dr Today

[SearchingForAnswers]

not sure how productive this will be. He only  believes in ordering the one IGA test - I believe it was this one:

 

"tTG-IgA or tissue transglutaminase-IgA"

 

said that the others don't really tell you much and that if you have it, it will blaringy show on this test.  He also wrinkled his nose when I told him i didn't have diarrhea, and when I said a lot of people don't - (ok I threw out a 50 % figure because I couldn't remember the actual number) he was like "no, that's not really true"  he said that everyone ends up with Diarrhea eventually, it just depends on where they are when diagnosed.  That if it's diagnosed earlier, it's caught before the Diarrhea starts.. 

 

Anyhow - that's the only blood test he ran - never heard of the SIBO I don't think.  So no hope on that one.  He seems to be leaning toward it being ulcers rather than Celiac - though he allowed the test.

 

I told him I was scoped last year - no ulcer found - all he said was "well that was last year".    So I suppose anything is possible. He put me on a stronger proton pump inhibitor and I'm to check back after 10 days.

 

No answers yet.  Blood test should be back by Friday or early next week - we'll see.

 

Thanks all

 

Tina

[nvsmom]

Doctors who admit they don't know something we don't are very rare. I think doctors who admit they don't know something and actually work to learn more are close to extinction. 

 

The tTG IgA does catch most celiacs but it's sensitivity is some where between 75 and 95%, which means 5 to 25% of celiacs are missed. If your test is negative, and you feel the need to get further testing before trying the gluten-free diet (for NCGI) I would go for it. Look for a doctor who knows about the anti deaminated gliadin peptides tests (DGP) and find someone who is willing to test bothe IgA and IgG versions of the tests as some people are only positive in the IgG test versions.

 

Good luck. Let us know how it goes. 

[SearchingForAnswers]

Seriously disheartened and dissapointed.  I'm sick of Drs.  I haven't been through what many have I am sure, but I am still frustrated.  Last year, after dealing with the intense stomach pain, and being CERTAIN in my mind that I had a duodenal ulcer, I was scoped by my Gastroenterologist and told that i had an inflamed stomach with polyps, but the biopsy was negative for H pylori (or whatever else they test for).  He said it was probably stomach spasms and prescribed something for that and pepcid to take for 4 weeks.

 

The pain seemed to subside - though my tender stomach never completely felt right.  it always felt sore, right above my belly button.  so when the pain reared it's head again, I started researching on my own to find answers. Thought i found it with Celiac.  Called the Gastroenterolgist, and the surgeon i had spoken to last year. both said they don't test for celiac and to contact my primary care doc.  The above is what happened yesterday.   Today, I had a follow up appt with my fertility Dr to discuss my recent miscarriage and following D&C.    When I tried to talk to him about Celiac, recurrent miscarriages, and the possible connection, he basically came down on me for trying to google it and research.  Said that the most likely cause for my miscarriages is Maternal calendar age (yes, I am 44, and yes I know that is a factor)  He was mad because I was trying to determine if there was a link, and said we shouldn't be wasting our time on this, and should focus on trying to get pregnant again as soon as possible.  He was very vocal on his opinion of people who research their symptoms and try to self-diagnose (i obviously hit a nerve with him)  He said that any stories I read on the internet are sensationalized, and that there are thousands of people diagnosed with celiac, but only a small handful have sensationalized stories of how they were mis diagnosed, mis treated etc. He also said there is no connection between Miscarriage and Celiac. Said that he has celiac patients and non-celiac patients, and he has far more patients that are NOT celiac that have fertility problems than those that have celiac.

 

It was pointless to try to talk to him, so I gave up.  I had many arguments i could have brought up, but he had his mind made up, I had hit a nerve, and he was pretty vehement about not wasting time going down this path. He offered to take the blood work tests that I thought my primary care dr had missed - vitamin deficiency test (he said "I don't even know how you test for that, but I can test for a B12 deficiency.  Do I think a vitamin deficiency has anything to do with your miscarriages - no, I don't")   He basically said he would appease me but it was a waste of time.  He offered to run some other tests that he though were relevent (blood clotting disorders and some others) but basically put any digestive questions or possible causes down to a paranoid(my word) patient trying to self diagnose.

 

I felt pretty crappy leaving there. Then I went to the lab part of the office for the blood draw for these tests, and it took 3 nurses and 5-6 pokes for them to find a vein. 

 

To add insult to injury - or rather injury to insult in this case, I was told I have to have another hyster (something - i can't remember or pronouce it) but it's a test where they shoot saline up into your uterus during an ultrasound and it can be rather uncomfortable. I don't think it's as painful as one of the other tests they ran, but I have to have another one of those to check my uterus before we try again. 

 

I came home to a message from the Primary Care doc - who called to tell me my Celiac blood test was negative. 

 

The day sucked.  And After doing some more reading - it does sound like a duodenal ulcer fits all my symptoms - I mean ALL of them. Except that it wasn't found on endoscopy last year.  But then again - it says they can heal quickly, so it may have been healed and and recurred and if that is the case, the fact that it is starting to feel better, they probably wont find it and it's all a waste of my time and energy.   I'm tired of being dismissed and not getting answers. 

 

 

[nvsmom]

((HUGS)) Doctor appointments like that are the worst. How they think it's a bad idea that we try to educate and treat ourselves when our 15 minute appointment with them isn't enough to fix us, is beyond me. 

 

Do you have a copy of your endoscopy results? There are some really knowledgable people in that area around here who might be able to help interpret it for you.

 

Are you going to try the gluten-free diet? conservatively speaking, about 1/10 people have a gluten intolerance, and intolerances can cause lots of inflammation that can mess with many systems in our bodies. It might be worth a try to stick with gluten-free for at leats 6 months... it can't hurt.

[SearchingForAnswers]

((HUGS)) Doctor appointments like that are the worst. How they think it's a bad idea that we try to educate and treat ourselves when our 15 minute appointment with them isn't enough to fix us, is beyond me. 

 

Do you have a copy of your endoscopy results? There are some really knowledgable people in that area around here who might be able to help interpret it for you.

 

Are you going to try the gluten-free diet? conservatively speaking, about 1/10 people have a gluten intolerance, and intolerances can cause lots of inflammation that can mess with many systems in our bodies. It might be worth a try to stick with gluten-free for at leats 6 months... it can't hurt.

thank you -

 

apparently there was only one thing they could tell me - that there is a reference range of 1 to 4 for normal, and mine was 1 - so not even slightly elevated. 

 

It's probably an ulcer and it fits - just frustrating because the test last year didn't reveal that.  I think I probably need to treat the ulcer sypmtoms first, then try to see about gluten.  Mainly because, my stomach/intestines are kind of raw at the moment, and eating things like yogurt or bread are easy on that raw/painful areas.  Sounds counter productive - but my I have noticed the pain spiking with spicy food and nuts.  so I'll just keep going and see what happens.

 

I don't even know if want to see anyone else right now.  I just don't want to keep getting shot down, and the fact that both things I was tested for that it could have been (Celiac or Ulcers) - seem to be coming up negative - though I really think ulcers might be part of the problem - whether or not celiac is or isnt. 

 

Doctors suck.

[Lock]

thank you -

 

apparently there was only one thing they could tell me - that there is a reference range of 1 to 4 for normal, and mine was 1 - so not even slightly elevated. 

 

It's probably an ulcer and it fits - just frustrating because the test last year didn't reveal that.  I think I probably need to treat the ulcer sypmtoms first, then try to see about gluten.  Mainly because, my stomach/intestines are kind of raw at the moment, and eating things like yogurt or bread are easy on that raw/painful areas.  Sounds counter productive - but my I have noticed the pain spiking with spicy food and nuts.  so I'll just keep going and see what happens.

 

I don't even know if want to see anyone else right now.  I just don't want to keep getting shot down, and the fact that both things I was tested for that it could have been (Celiac or Ulcers) - seem to be coming up negative - though I really think ulcers might be part of the problem - whether or not celiac is or isnt. 

 

Doctors suck.

 

I know about bread and dairy soothing the stomach. For years, I would eat both those and it seemed the only thing that stopped my discomfort. Paradoxically I know now that I am sensitive to both wheat and cow's milk. I've read that sometimes the very things causing the problem can temporarily make you feel better. I can't remember the technical explanation, maybe they cause your stomach to release mucus or something that temporarily blocks the discomfort. I don't know, but I was getting sicker and sicker in the long run.

 

If you have had a gluten sensitivity for many years, it may be hard to disentangle and sort out the various problems. One is bacterial imbalance.  H-Pylori is not the only bacteria that can cause ulcers, but they have not identified all of them. A trial course of antibiotics might improve you temporarily but if you are celiac or NCGS it won't fix the underlying problem.

 

Another paradox is that while doctors treat stomach problems with pills that decrease your acid, this too makes things worse in the long run. You need acid to digest nutrients. There are so many nutrients we need and the doctors only test for a couple of them. B12 and D being the only two vitamins I've ever been tested for as far as I recall. But if you have significant digestive malfunction, you could be deficient in fat soluble vitamins, and if your stomach is not producing sufficient acid and/or your small intestine is not absorbing properly you could also be deficient in zinc, magnesium, calcium, iron, and basically the whole periodic table of elements, most of which are needed in small amounts to be healthy.

 

I have come across doctors who have a thing about patients Googling and learning on the Internet. We all know the Internet is full of misinformation, but it is also full of good information as long as you know how to sort them out. With some experience, you can tell when a website is pseudoscience, trying to sell you something, and when an article is in a scientific journal. Most doctors assume most patients are stupid and don't discern the difference. But the fact is, patients themselves tend to be the best "expert" on their own condition. They are most motivated to spend the time researching their own symptoms.

 

The Internet has changed the whole power balance between doctors and patients and some doctors can't handle it. We patients can now access almost all the information in existence on a disease. The only thing we lack that we need from the doctors is their experience with other patients. The good doctors are the ones who not only tolerate patients researching on their own, but embrace it, and let it help lead them together to answers.

 

It really sounds to me like you don't have good rapport with your fertility doctor. I understand the urgency of trying to get pregnant and you may not want to take the time to find another to help you, but this one seems dismissive of your other system problems, and wants to focus on your uterus. I'm not sure I would want to undergo another uterus - invading procedure under the circumstances, until you get on the right track with your digestive problems.

 

I think your instinct about an ulcer is probably on the right track. I'm concerned that the two gastro docs you asked both said they don't test for celiac. I've looked at quite a few websites for clinic and hospital Gastrointestinal centers and been shocked at the list of disorders they treat, EXCLUDING celiac. They treat IBS, Crohns, etc. etc., and no mention of celiac. Sometimes it is because the Celiac center is located in the pediatrics department. This tells me that medicine is still too often thinking of celiac as occurring only in the growth retarded, diarrhea-ridden child.

 

If you achieve a full term pregnancy and you are very sick with gluten induced damage, it's possible the pregnancy could throw you into a health crisis. This could end up "good" in the sense you could end up with a positive diagnosis, but it's probably better to heal your digestion before stressing your body with a pregnancy. On the other hand, with your age, you do not want to delay getting pregnant.

 

I am disappointed your fertility doctor seems ignorant of the connection between miscarriage and celiac. The truth is, if you have been gluten sensitive and/or latent celiac all these years, you are more likely to have non-digestive issues (including reproductive system, thyroid, neurological, etc.), and you are also less likely to be diagnosed easily for that very reason.

 

In other words, when your doctor says " that he has celiac patients and non-celiac patients, and he has far more patients that are NOT celiac that have fertility problems than those that have celiac." THIS IS A LOGICALLY INCONSISTENT STATEMENT. Those of his patients that do NOT have celiac are one of two: either healthy, or UNDIAGNOSED. Those who ARE diagnosed celiac are on a gluten free diet, therefore their systems have healed.

 

For this doctor's statement to hold water, he would need to know for certain that all his patients that do not have celiac are in fact, not cases of hidden celiac, silent celiac, or non-celiac gluten sensitive. There is widespread evidence now that celiac/GS is terribly underdiagnosed - there is absolutely no way the doctor can know how many of his healthy patients are in fact non-classic celiac. He is using a false premise... his premise is his own limited idea of who has celiac (those with obvious gut symptoms and a classically positive early diagnosis.) But it is becoming recognized now that many celiacs slipped undetected through childhood and youth, and are now reaching middle age with a slew of health problems. If you go on pure genetic susceptibility, it's possible up to 30% of his "healthy" patients are undiagnosed celiac/NCGS.

 

What does all this mean for you? Every case is individual, and in your case, age 44 and trying for children, if I were in your situation here is what I might consider:

 

*Even though everyone says stay on the gluten until diagnosis, in your case, you do not have the time to waste weeks or months just to get some doctor to admit you've got a positive test and are gluten sensitive. I'd go 100% gluten-free from now on, but that is me, however for you, you need to think very carefully about the decision and make sure it is what you want to do.

 

*Ask your doctor, or find another doctor, to treat you as if you were H-Pylori positive. The doctors are all about not "overusing" antibiotics these days and they are correct, HOWEVER, again in your case, it is likely you have one or more of the other ulcer-causing bugs. While ultimately, straightening out your gut flora and nutrition will allow your own system to kick out the bad bugs, and you risk some side effects from antibiotics, in this case it could be right for you. You are right, your stomach lining heals quickly and it could be hard to "catch" the ulcer on a scope or an x-ray. But it could still be a cause of chronic pain and problems.

 

*Make sure the doctors have considered gallbladder disease, sphincter of Odi malfunction, and other common causes of digestive problems. I agree with nvsmom... your endoscopy report could be key.

 

*Embark on a healing nutrition program which focuses on "good" fats, limited but densely nutritious protein, no sugar (especially corn syrup), fresh organic vegetables, and as few grains and carbs as possible. The nutrition expert that turned around my life is here: Open Original Shared Link

You may or may not like this eating plan. Others may be right for you, like if you want to be a vegetarian. The important thing is to avoid gluten, to get the right fats (organic oils like coconut or good quality fish oil or pastured animal fat), and to pay attention to vitamins and minerals. Make sure any supplements you buy are gluten free.

 

*Go ahead and order the DNA test for the celiac genes from EnteroLab, or Cyrex Labs, I think Kimball is another one. (If you live somewhere they can ship to.) You can order some of these without going through your doctor although you may have to pay for them yourself. The results if strongly positive will motivate you, give you one more clue, and give you ammunition to take to whatever doctor might listen to you. If the results are negative that still does not mean gluten might not be the cause of your problems.

 

Your situation is that you don't have time to fool around with these obstructive doctors. I would also beware of "alternative" doctors who may try to get you into expensive and time-consuming treatments. They help some people though and if such a thing resonates with you, go for it. Just educate yourself first about the pros and cons.

 

I don't know much about miscarriages but my understanding is that there are two main areas of cause: one, the child is genetically incompatible with life. Two, the mother's immune system is rejecting the pregnancy for some reason. I think in the past they usually told people it was number one. But now the thinking is leaning more toward the second cause. The mother's system could reject the pregnancy for a number of reasons. One is the blood type of the father. I'm sure you've checked that. There is much that is not known or understood about this process, but gluten sensitivity is a growing suspect as being at the root of many of these miscarriages. This may or may not be your problem but going gluten free cannot hurt you (other than time, effort and some cost, and the missed opportunity of proving you're celiac) and it just might solve the problem. Understand though if you go gluten free, and then later need to go on a gluten challenge for a diagnostic test, that will not be fun. Good luck.

[Soccer-Mom2405]

I'm so sorry.  {{{{{HUGS}}}}}

 

I had blood tests for celiac done almost 2 weeks ago and they came back negative.  My doctor did the full panel of celiac tests, including the Celiac Disease Comprehensive Cascade.  Although my blood tests came back negative, I did have genes and/or gene pairs.  I follow up with a GI next Thursday.

 

Have you thought about diet elimination?  Couldn't hurt at this point.  Hope you find relief and more sincere doctors soon.

[appletree729]

I'm so sorry to hear about all of your frustrations - they are certainly understandable:(

 

please don't let your doctor shame you into feeling like you shouldn't be taking charge of your health and researching things yourself - a doctor/patient relationship is a partnership and you should be respected if you have the desire to more fully understand your symptoms and research them on the internet.  The web has a HUGE amount of reliable information (as well as a huge amount of unreliable information!).  As long as you are careful with your sources, it's a really great tool, even for someone without a medical degree;)

 

And for what it's worth, me 9 month old was hospitalized at the nation's leading children's hospital for unexplained, SEVERE GI problems that sent her into shock!  When she was discharged after a full week, we still had no answers.  And THREE months later, *still* no answers!  

 

I wanted answers and yes, used GOOGLE, lol.  I admit it.  And I'll also admit that that very same day I stumbled upon an obscure condition that I was convinced was causing my daughter's problems.  And I'll ALSO admit that, after 'presenting my case' to her doctors, we had a diagnosis within that week.  

 

The internet is a very useful tool, even for 'lay people' with no expertise;)