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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 was only asking because when ferritin is low that you can experience hair loss/fatigue etc. even if your other iron levels are in range. This just happened to me so I thought I would share just in case it helps you. Ferritin should be above 50 to be optimal, not just "in range."  I've been on iron supplements and much better now. This may not be your problem at all, but I would have them check your ferritin levels. Low iron or anemia is common with celiac. The ferritin test is measuring how much iron is stored in your body. FYi: Iron binding capacity is really telling you how much protein your liver is making in order to carry that iron around. Usually, iron binding capacity will be higher in the range when iron is low. Edit: Also my blood pressure was low when my ferritin level got very low.
    • Hello I'm happy to join, any help is greatly appreciated as it can be difficult by times for sure. Unfortunately, I have been told my doctor has definitely not been doing anything correctly and very backwards about Alot of things. I live in canada, and there are celiac support groups I have found but I am about 2 hours away from any. I live in a pretty rural area. Although,  I have still received some help from them , they prefer a diagnosis before helping out to much. My doctor has me on a waiting list to see a gastrointestinal specialist but whenever I called her office to inquire about an appointment time I was told there was a very long wait and that I was considered to be a non emergency. So I am waiting to get an appointment. I have seen a dermatoligist for some of my rashes and she said it was dermatitis and gave me different creams for them.  It is frustrating because I don't know how to go about getting a actual diagnosis besides this biopsy. I was told to request a different specialist, but supposedly there is a waiting period for most in our area. 
    • Thanks for all of the replies. I've just found out I'm not getting to see a dietician because of not having a definite diagnosis which is another blow. I've had loads of bloods done but they just say they're all normal. I did have low vitamin D and high parathyroid but it's sorted itself out after a course of high dose vitamin D and they're not checking it again for a year. No chance of getting referred to endocrinology, gastro won't do it and neither will my gp. I've tried giving up coffee and all fizzy juice and it hasn't made a difference. I'm exhausted and scared and still have no clue what to do next. My gp has zero experience dealing with this type of thing - last time I was there she said it could be because I've restricted my diet too much and I should eat more gluten-free replacement products - everything I've read online says this is the worst thing to do! I'm asking for a copy of the last blood results this week so I can go through them myself but other than that I'm pretty stuck. 
    • I really am iffy on talking about this side of my gluten issues, I think I am about to ruin my reputation on this forum coming about as some extreme crazy guy saying this but I wanted to get this off my chest and perhaps see if anyone else might share a similar trauma. I get emotional recalling it, this side of my reactions, as it is most ingrained and very traumatizing experience, and I am not proud of it as the mentality I have now disgust me but I am going to come out about it. One of the scariest things in this world is when your own mind turns against you, when you can not think about what you want to think about, when you can not do what you know you should be able to do. When I got glutened really bad these where things I felt with my own mind would start looping, and thoughts would not come together. I would loose comprehension, feel like I know I should be able to think about something but my mind was not working. The same thing looped over and over and over like a broken record, This led to anger, anxiety, depression, panic, top it off with loss of feeling in my hands and feet, and the pains in the gut......it was a nightmare. I would go as far as beating my head against walls and punching them out of frustration as to why my own body and mind where not working, I just wanted it to end the pain to stop. I still have scars on my fist from punching into a nail in a stud once and kept going.....I scared everyone and myself distanced my self from loved ones. And started running a bucket list accepting that I was going to die soon. Hell to this day parts of the brain damage seem to be permanent as I can no longer do computer programing or some forms of math, they just no longer make any sense or connect. Then we learned what was causing it, and once the symptoms started to fade, I would get very angry if someone in the shared house did something stupid and got me sick again. The fear of going back to that caused violent and drastic actions to get away from what was making me sick. The sheer fear of my own mind turning on me led me to drastic actions to prevent it, throwing everything away I thought could make me sick, making sure no one else used that kitchen, used freezer paper and gloves when fixing my foods and working in there. I really destroyed and burned all bridges I had then and alienated myself from others. In the end it motivated me to learn how to cook, to get and renovate my own apartment in a building downtown, and start a business to pay for my new diet, by selling safe food to others with this issues locally at farmer markets. But it changed me on a very deep level, that traumatic experience to this day I have a issue looking at others and dealing with other humans who eat that stuff.......the stuff that breaks my mind and body so horrifically. If I have to compare it to something its like watching aliens drinking antifreeze and eating poison.....it causes a subconscious level of disgust and slight envy. I really can not even look at the stuff without recall what it does and feeling a twitch. I know I am the alien here, but it feels vise versa, and I look down on the normal people as odd creatures.  I go to the store and find myself overly avoiding contamination, keeping stuff in my own bags, asking the cashier to scan and bag it as I pass it not letting it touch that flour I see on the belt. I am hyper sensitive to the stuff I know and that fear semi dominates my mind as crazy as it sounds.  I am recovering and am forcing myself to try to mingle with other humans overlooking that one thing, but that deep rooted trauma still flares up as a protective measure especially around foods.  I could talk on and on about the other side effects but this one is the hardest to talk about it, and I feel others might be able to relate to it.    
    • Time.  You need time to heal.  Yeah, I am like a broken record!  😄 So...Lycra is your best friend for now (that and old baggy sweats!).  Hang in there!  Hugs!     
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