Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Do Gi Docs To Med School?
0

9 posts in this topic

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?

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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....

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites




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?

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,096
    • Total Posts
      920,336
  • Topics

  • Posts

    • Ah, more information trickles in...... There are a few things that may elevate a Ttg igA result: 1)  celiac disease, 2) Lyme disease, 3) another autoimmune disorder.  Someone recently posted during the Last month who had a very elevated TTg but ended up not having celiac disease.  Instead he was diagnosed with Lyme disease.  My memory could be wrong, so do the research.   The bottom line is that further research by a GI is recommended.   Celiac antibody results do not always correlate with the severity of intestinal damage in someone with celiac disease.  That is why an endoscopy/biopsies is still the gold standard for diagnosis.  Europe is opting to avoid the endoscopy in small children, but not the US.   Her IgG Celiacs tests were negative, so he is checking for a wheat allergy?    
    • Awok, Welcome to the forum.  Have you considered trace gluten?  Here is a study on the topic: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598839/pdf/1471-230X-13-40.pdf It could explain why you felt good for a while.  I personally was glutened badly last summer.  I have no idea what got me.  I suspect either a prescription medication or one gluten free product (not certified).  I ended up on a whole foods diet and avoided even certified processed gluten-free foods including grains until I was healed (three to six months).  
    • I've had a range of symptoms in the last 2 months and in the past few weeks I have discovered that my TTG abs (igA) levels were 41 (my igA tests were fine). The doctor said that he is pretty much certain that it is celiac disease and I am awaiting an endoscopy to confirm it.  Before I found out that my TTG abs (igA) levels were high, I noticed that my body was reacting really badly to dairy products. I went on an elimination diet and stopped all gluten and dairy products and felt much better. I carried this on after my results and thought that I must have developed a dairy intolerance due to my celiac. 2 days ago I accidentally consumed a glass of wine which I thought was dairy free but it contained Milk. I have not had any gluten.  I am currently in the middle of a flare up. All of a sudden rashes have started to appear on my hands and my anxiety has returned (usually not a anxious person). No diarhhoea, vomiting or digestive issues. I am currently suffering from muscle twitching, rashes predominantly on hands and feet, brain fog, pins and needles/numbness on hands, feet and arms. However, I have been tested for milk allergy and this came back negative. Is it possible that it is dairy that is causing my symptoms/autoimmune reaction and could this be a reason for elevetated TTG abs (igA) levels. Or has the doctor only picked up my celiac and missing something else. If it was dairy intolerance then I would have digestive issues but I don't seem to have any. Could it be the casein protein?  Anyone been in a similar situation or can anyone provide some insight? 
    • Hello Everyone, This is my first post here and I am writing to seek help from experienced people here. I have been suffering for over 4 years now and still no where close to having a solution/ satisfactory diagnosis of my problem. My problems started in Mar 2012 with sudden diarrhea which would not go away for days. At first, I was given general antibiotics medication which would help bring down the frequency for some days and then it would come back. Since then it has been going on. I am giving a time line and the series of tests and procedures I have gone through. Would like opinion from experienced and experts here. I can send the scans and reports if required. Would really appreciate the help. Male, Indian origin Mar 2012 - onset of symptoms - multiple bouts diarrhea - spaced 3-4 weeks, bloating, weight loss (to start with I was 74 Kgs), GP managed with antibitocs and loperamide for months Dec 2012 - consulted a GI doc towards end of 2012, Colonoscopy done - conclusion was "IBS" - was advised to manage stress. use Rifaximin and immodium Jan 2013 - Aug 2013 kept moderately fine for 3-4 months ..again started getting frequent diarrhea + weight loss (was around 70 Kgs) Oct 2013 - Consulted another doc, MD - stool and blood test - Ecoli and high Eosinophil Count, medication done for 5-6 months, montinored eosinophil from nov - Mar: always kept high.. came down but then again shot up in a month Mar 2014 - Consulted another GI expert - Endoscopy and duodenal biopsy done - H Pylori and Unremarkable Villious pattern, (weight 68 Kgs) - On and Off diarrhea continued. Given: Ivermectin July 2014 - again same doc - Blood test done: High Eosinophil count,  Colonoscopy and Ileum biopsy - preserved villous architecture, features of eosinophilic enteritis; Endoscopy  + duodenal biospy again - numerous H pylori bacteria, Preserved villous crypt ratio, features of eosinophilic enteritis > conclusion: I have eosinophilic enteritis. Started on Prednisolone (steroids) Aug 2014 - 3-4 days of severe diarrhea> weight came down to 65 Kgs. Hospitalised for 3 days - continued on Prednisolonerios Sep 2014 - After 10 days only again a serious bout of diarrhea - hospitalized again - put on IV fluid for 8 days - weight 59 Kgs. Colonoscopy + biopsy done: features of superimposed c. difficile colitis, non-specific mild colitis > c. difficle test came out negative. CT Enterolysis +Scan done: mesenteric lymphadenopathy > nothing wrong acc to docs. IgA deficiency found - diagnosed Celiac - advised for Gluten free diet.   Sep 14 - May 16: continued gluten-free diet, gained weight upto 63 Kg in Jan 16, but then started losing again and came to 59 Kgs in May. No signficant diarrhea. Minor issues. June 16 onwards: Again diarrhea started, still on gluten-free diet, weight lost - 54 Kgs now. hospitalised again under same GI doc - blood test - eosinophil high, CT Enterolysis done: Showing mucosal thickening in Jejunum and Ileum; Enteroscopy (going in jejunum) + jejunal biopsy - jejunal erosions + villous blunting, marked atrophic with V:C ratio of 0.5: 1 to 0:1. HttG blood test done - Came out negative> Conclusion : No gluten exposure (how?) + Refractory Celiac disease. June - July - have been suffering from continuous diarrhea (goes off for 5-6 days and comes back, bloating, trappings in abdomen - waiting for I don't know what. On Rifaximin + Ivermectin + Codeine Sulphate (for diarrhea) I am very depressed and have no clarity on what's going on. If it is celiac, why am I not doing better on gluten-free diet. If the villous damage is still there in small intestine, then why did I kept fine for Sep - May period? HTTG - negative now but was NOT taken in Sep when I was first diagnosed with celiac. Can we trust negative HTTG now and conclude that it has come down? I am 20 kgs down from my ideal weight and still going down. Have no clue what NOT to eat to stop this. Why is eosinophil always high. Can any of you expert help me to put my case to docs in other countries? With lots of hope, Alok          
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,131
    • Most Online
      1,763

    Newest Member
    Feralgurl
    Joined