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Do Gi Docs To Med School?


DonnaMM

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DonnaMM Explorer

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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Takala Enthusiast

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.

rosetapper23 Explorer

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....

DonnaMM Explorer

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

DonnaMM Explorer

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

rosetapper23 Explorer

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?

DonnaMM Explorer

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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rosetapper23 Explorer

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.

DonnaMM Explorer

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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    • trents
      I would ask for a total IGA test (aka, Immunoglobulin A (IgA) and other names as well) to check for IGA deficiency. That test should always be ordered along with the TTG IGA. If someone is IGA deficient, their individual celiac IGA test scores will be artificially low which can result in false negatives. Make sure you are eating generous amounts of gluten leading up to any testing or diagnostic procedure for celiac disease to ensure validity of the results. 10g of gluten daily for a period of at least 2 weeks is what current guidelines are recommending. That's the amount of gluten found in about 4-6 slices of wheat bread.
    • jlp1999
      There was not a total IGA test done, those were the only two ordered. I would say I was consuming a normal amount of gluten, I am not a huge bread or baked goods eater
    • trents
      Were you consuming generous amounts of gluten in the weeks leading up to the blood draw for the antibody testing? And was there a Total IGA test done to test for IGA deficiency?
    • jlp1999
      Thank you for the reply. It was the TTG IGA that was within normal limits
    • trents
      Welcome to the forum, @jlp1999! Which IGA test do you refer to as being normal? TTG-IGA? Total IGA? DGP-IGA? Yes, any positive on an IGA or an IGG test can be due to something other than celiac disease and this is especially true of weak positives. Villous atrophy can also be cause by other things besides celiac disease such as some medications, parasitic infections and even some foods (especially dairy from an intolerance to the dairy protein casein). But the likelihood of that being the case is much less than it being caused by celiac disease.
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