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Do Gi Docs To Med School?
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Ok so I wrote earlier about my severe iron defienciency I was having and my need for a GI workup based on advice from the doctor at the hospital. I have not gone to the GI doctor yet but work as a nurse and saw a doctor that works with my GI doctor. I was talking to him and telling him about my previous EGD results (villous atrophy in duodenum and jejunum) with negative biopsies and blood samples. He asked if they checked my poop for blood in the hospital which they did and it was negative. Even though I have had symptoms of celiac before but I am now on a gluten FULL diet and have no diarrhea just constipation and mild cramping. He swears I must have some sort of GI bleed somewhere and there is no way I hAve a malabsorption issue because I have been tested for celiac, UC and crohns (although I still believe celiac could be my culprit) he even said himself maybe it's gluten intolerance you have but that wouldn't cause iron defienciency so it must be a bleed. Is this guy that uneducated??? I have no symptoms of an ulcer and I am already on prophylactic meds for that and my stool has no blood. If I am eating enough iron and not losing blood the only other option is malabsorption. I am so frustrated really hoping when I meet with my own doctor (who really isn't much better) he will listen to me more. Even my hematologist said I may just be one of those people that dont absorb and need infusions every once in a while for the rest of my life. So even she thinks its malabsorption!

Btw anyone here still not have resolution of anemia with gluten free diet and need iron supplements or infusions?

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I'm sorry, but.... I really just don't understand this, you say you have villous atrophy but you're back on a gluten FULL diet for testing, yet you're low on iron ?

Uh, no wonder. B Vitamin malabsorption causes anemia sometimes. You know, these doctors get paid for testing you, they don't get paid if you just eat gluten free for long enough, (and supplement,) to heal up.

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Okay, I agree that doctors are uneducated and ignorant, but a response with regard to that would take up several pages. Yes, I believe that you're suffering from malabsorption issues. Yes, I believe you probably have celiac. I wasn't able to absorb iron for a LONG time after going strictly gluten free. I had to get infusions whenever my numbers dropped, and it was only after I had to undergo chemotherapy that my gut finally healed so that I didn't need the infusions anymore. I've followed a very strict gluten-free diet since that time and definitely no longer need infusions or even oral supplements. I don't know if the damage to your villi will ever heal enough to allow you to stop infusions. I hope so, for your sake....

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I was told after my biopsy last year my biopsies were negative and told to eat gluten I went a few months gluten free then brought it back and have had no problems. Also I am only iron deficient not b12 or folate. I have now presenting a year later with severe iron deficiency my HGB was almost nine normal is 12-15 depending on gender

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Rosetapper,

Why did you have chemo? I am interested that you resolved with chemo. Because all my medical problems started after I did chemo. I even had one doctor tell me that the blunting was from my chemo, I was like ummmm what??? You obviously have no answer

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I had chemo for breast cancer six years ago. Before I underwent chemo, I contacted Dr. Peter Green at the University of Columbia to know what to expect (he's an expert on celiac disease and wrote the book "Celiac: A Hidden Epidemic"). I wanted to know if my celiac would worsen during the chemo. Surprisingly, he told me that I should expect an improvement in my celiac symptoms. He said that he did not know why this happens, but other celiacs had reported that some of their symptoms had actually improved while undergoing chemo. In my case, he was right. Perhaps it depends on what type of chemo a person has to take (??). I've never heard of chemo blunting villi....but who knows?

Is it possible that the chemo--or even the cancer and your feelings about it--could have triggered your celiac in the first place? Were you diagnosed BEFORE or AFTER undergoing chemo? One thing that Dr. Green stressed is that, while undergoing chemo, I should be VERY careful not to eat gluten. He said that it could do a great deal of damage while I was undergoing my chemo treatments. Perhaps that happened to you?

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I have not been officially diagnosed yet, my primary and OB/GYB and the hospital doctor think I have it but because my labs and biopsies were normal although after the test the GI said your intestines look like that if a celiac patient. I do believe my cancer was my "trigger" of whatever is going on with my stomach because I had no problems before and now for about 6 months out of the year I have nearly controllable diarrhea then about six moths of constipation, the diarrhea got so bad I had to get FMLA at work

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I would strongly recommend that you go strictly gluten free to see if your health issues resolve. Because you only just developed symptoms, it could be that there was not enough damage to detect with an endoscopy. Also, the damage could exist farther in than the length of the scope. Therefore, since two doctors are suspicious that you might have celiac, I'd definitely go gluten free if I were you. You don't want to mess around with cancer! If you do, in fact, have celiac (or even gluten sensitivity), your immune system will not settle down until you stop eating gluten. Otherwise, your immune system could continue to be activated...and that could mean the return of your cancer. My oncologist discovered that so many of his patients had celiac, he routinely tests new patients for it. He agrees that, as long as the primary auto-immune disease is not being treated, the cancer will thrive.

I was glutened accidentally last February, and two months later my cancer metastasized to my lymphatic system. My oncologist and I believe that the complete collapse of my immune system because of the glutening caused the cancer to advance.

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It's interesting you comment on the immune system, because since treatment I have developed thyroid issues, clotting problems and inappropriate sinus tachycardia, all believed to be either auto immune or an autonomic dysfunction. I get another EGD soon and I am curious what it will show. Even if the biopsies are negative again if the damage is worse I am taking that as a diagnosis

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    • I think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
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