Celiac Rant: Where's My Follow-Up Care?


Forgive me celiacs for I have sinned. It has been two weeks since my last celiac rant.

Yes…I am a bit backed up on the rants. For those who have sent one to me and I have not published, my apologies. It’s been a busy stretch at the Dude Ranch and I’ll do my best to catch up on things in the next week or so.

Today’s rant deals with one of our favorite topics: idiot doctors.

The woman below, after a whole lot of doctor frustrations, was finally diagnosed with celiac disease and sent on her merry way. No recommended follow-up visits. No recommended dietitian. Just a diagnosis and good-bye.

I think a lot of us have been there and I find it fascinating in a real disturbing way.

The cynical side of me says that doctors don’t care much about celiac disease because once the diagnosis is made, there is no money in it for them. There is no medicine; no need for monthly visits; no need to get pharma involved.

Do you agree?

Here’s her story.

I am a newly diagnosed celiac. I have been struggling with stomach upset and bloating for years. I have had numerous trips to the ER with unexplained abdominal pain. In February 2011, I asked my GP about celiac disease. She advised me that I did not have it.

In May 2011, I was diagnosed as severely anemic. My levels were almost non-existent. Immediately my GP stated that I needed to get weekly iron injections. So as a good patient does, I follow her advice. Each week I would ask what would cause me to be anemic as I eat everything in my diet and I had a hysterectomy in 2008. I again asked about celiac. She again advised that I did not have it. She suggested that if I did not believe her that I could always eliminate wheat from my diet and see how I feel. This was not something that I was prepared to do.

I had both an endoscopy and colonoscopy completed after months of reminding her that I should not be losing blood and the surgeon advised me that he took three biopsies and would see me back in his office. At our next appointment, he told me everything came back clear other than the obviously signs of GERD and he changed my stomach pill.

I asked if he tested for celiac. He did not. He advised me that it is a different test and that he wasn’t aware that I wanted tested for that. He suggested that I go gluten free for 2 weeks and if I noticed that I was feeling better, to return to him and that he would order a blood test.

I had my weekly appointment with my GP (6+ months of weekly shots) and I had made the choice that I was done with the shots. They were painful, time consuming and just were not making a difference. So when I advised her that I was done, I also advised her that I wanted to be tested for celiac on my next set of bloodwork. She insisted that she has sent over 100 patients for the test and that they all come back negative. She also told me that they were expensive and unnecessary. I let her rant, and reminded her to add it to the requisition.

The next week when I went in for the results, she was astonished!! I think it was the TTG test that she ordered and she explained that basically anything over 12 would be positive for celiac. My results came back as greater than 100. That was after being gluten free for 2 weeks. She said she had never seen anything like it.

This was on a Wednesday. I was leaving for Cuba on Friday for a much needed week of vacation. She said that I was to go gluten free immediately. I told her that I had been requesting this test for 14 months and she wasn’t concerned about it then, that I would change my diet upon my return from my vacation.

She continued to tell me that I could not make that choice. I asked her what happens now. She said you go and live a gluten free life. I said what about follow up? A referral to a dietician? Another scope? She told me to Google it. She said all of the information that I needed was on the internet. See you in a year!!

So here’s my frustration….everything I read on the internet says get a biopsy. Some sites say this food is ok, other sites say it’s not. Most people know immediately when they have been glutened. I don’t. I don’t know which symptoms were celiac related and which weren’t.

I have no idea what to do. Where to start. When I’ve gone wrong.

So when someone says to me, “Is this ok?”, my response is, “I have no idea”.

I have done some Googling and found some really good sites. I have joined the Canadian Celiac Association and received a little bible in the mail about what’s allowed and what’s not allowed.

But frankly, I feel that I need more. I have made an appointment with my GP for tomorrow…I would like to have my iron retested and I want a referral to a specialist. I found one not far away that is an allergist/immunologist and his office staff advised that they deal with celiac. I am hoping to have better luck and support there.

Does anyone have any sort of follow up done or is it just a diagnoses and then out the door?

I was anemic and receiving weekly iron shots. Then I get diagnosed as celiac and I am no longer of concern?

Am I missing something?

Thanks for letting me rant!!

Need to Vent?

I hate celiac. You hate celiac. We all hate celiac.

With all that pent up anger, people need a place to vent.

Well…I invite you to lie on the Dude’s couch (figuratively speaking) and spew away.

There’s just one rule: Once you’re done venting, you need to move forward and put the negative vibes on the back burner. Positive energy brings positive results.

Email me your anonymous rant.

Don’t you feel better already??

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66 thoughts on “Celiac Rant: Where's My Follow-Up Care?”

  1. I went through the same crapola. I had to ask my PCP to test me for Celiac and got the response of “Well you don’t fit the criteria for celiac disease because your overweight and all celiacs are underweight.”. All I could think was hogwash because I had already did my research. Well after putting his intelligence down I got tested, which he had to google on a computer right in front of me. WTH?!! I should have known better but all I wanted was relief from my burning rash, joint and muscle pain, and migraines. My tests all came back positive for CD and DH. I knew I had to go GF. Did my PCP tell me that? No, he sent me on my way with a wave bye and see you next year. Well it’s next year and do you think I’m gonna go and see this doc. Hell to tha no! Wish me luck in finding a new PCP. I still haven’t found one yet.

  2. Oh I forgot to add. My PCP didn’t even tell me about the local support group either. Hell I thought I was all alone there for a while last year. I found a support group locally but the educator is hogwash as well. Telling Celiacs that certain places to eat are safe for Celiacs. Like Dominoes GF pizza. The educators response was I tried the dominoes pizza and I didn’t get sick. It wasn’t till I mentioned it to Glutendude and he said just because she didn’t get sick doesn’t mean it’s not doing damage. Do you remember that GD? I quit the group and rely on GIG to keep me updated including this blog. This blog is awesome. I love to hear about people who have certain issues and how they deal or their rants. It lets me know hey your not alone because a lot of people have the same issues with their disease. Thanks GD. Phew glad that’s off my chest.

    1. Denise,

      Don’t give up on your local support group, join them! Get on the board and help make a difference to those people diagnosed after you. The folks running the local groups are usually volunteers who needed help in the beginning, and now want to give back. If their advice is bad, challenge them on it.

      Attend the CSA and GIG national conferences to be as up to date as you can. Things have changed significantly in the 8 years since my diagnosis.


      1. I stopped the ataxia disease medications prescribed due to severe side effects and started on natural treatments from Tree Of Life Clinic (TLC), the herbal treatment has made a tremendous difference for me. My symptoms including difficulty moving, & speaking, all disappeared after the months long treatment! Go to www. tree of life herbal clinic. com This treatment is simply amazing

  3. The rant above is unfortunately all too common. We, as celiacs, have to resort to not only researching our food but our doctors. If you go here (http://www.celiac.com/articles/277/1/United-States—Doctors/Page1.html), there is a list of doctors who know their stuff about celiac disease. This is where those big non-profit ‘support organizations’ like the NFCA and GIG are lacking; lists of celiac-friendly doctors! I was fortunate in that my son’s GP knew his limitations and sent us to a top-notch pediatric GI who knew that he had celiac just by looking at him (and the tests confirmed it). Maybe today I’ll drop a line to the NFCA on this….Gluten Dude, I’ll metion this post to them as a good reason for them to add a doctor list!!!

  4. This is my RANT, but as a follow up: I went to that appointment with my GP the day after I e-mailed you. I asked for follow up blood work and a referral. She asked what I expected to gain from seeing a specialist. I advised that I would expect a definitive diagnoses, follow up procedures, and advice. I told her that when I eat gluten, I do not get the regular gluten reactions. She questioned what I meant. I said the times that I know that I had been exposed to gluten didn’t cause me to have to run to the nearest bathroom or anything, that it would be a couple of days later and I would feel draggy and I would have to recount my steps. I have been using the family toaster and utensils. I want to know if I am doing enough and expect that a specialist would be able to tell me that. She said….(wait for it)….that if I do not have diarrhea, I do not have celiac. I was basically in tears. I said you mean having my very high positive anti-TTG blood test means nothing now? She said no – not if you don’t have the signs of celiac. I said I do have signs, just not diarrhea. She said “I can’t believe that you are crying because I told you you don’t have celiac”. I said I am very upset because on April 25th you were very insistent that I was diagnosed as celiac and was to go gluten free immediately and now, less than 5 months later, you’re telling me that I don’t have the disease, perhaps just a sensitivity and to go ahead and reintroduce gluten into my diet. I am upset because you have no clue on what celiac disease is, yet every time I ask for a referral you refuse – and not only did you refuse this time, but you un-diagnosed the disease with no further tests!!!

    Needless to say, I walked out.

    I have since went to a walk-in clinic and the doctor there did a referral to a gastroenterologist. The problem is, it will be a year.

    Celiac disease is hard enough to deal with, but when you have incompetent people around you, it makes it that much harder!!!

    Sorry….just more to add to the story!!

    1. She officially gets my aware for “WORST DOCTOR OF THE YEAR”.

      Please email her a link to this blog post and maybe once she reads it, she’ll realize what an idiot she is.

  5. Welcome to the Celiac Club……examining information on the internet and reading books by experts you can’t get to (Shelley Case, Peter Green, etc) is the best information you are going to get unless you can find a medical professional who really knows about Celiac. Beware of many who say they do but really don’t…….I have had that experience several times. By the time I got to my dietician referral I knew more than she did and had read all the books she had to suggest. 8 years post dx I went back to see a GI about associated issues and basically I was told this is how Celiac is be happy. GD is right I think the medical profession doesn’t care because there is nothing in it for them and there is not enough research to support the anecdotal information we all have about how tough this disease is and all of the associated diseases that can come with it. I recently asked one specialist if now that I have been diagnosed with a third autoimmune disease do I get a prize.

  6. So sorry! That is awful! We had the experience with our child-where the dr did the celiac tests right away, but then called with the results and that was it-no follow up! The thing that saved us from going nuts into depression was a dietician friend who knew celiac diet and what to do-and who also encouraged us to get an appointment with a dietician through the hospital where the diagnosis was given. After awhile we also changed doctors because the one we had first would never return calls or anything. And the one we have now is amazing-total difference! There are some good ones out there-just wish there were more and they were easier to find!

    Hang in there-and keep fighting-you are totally in the right!

  7. OMG! you poor soul i’m so sorry that your doctor put you through all that…i’d like to think they apologized for their decade long faux pas but likely not. Modern medicine is good for some things but honestly if I were you with respect to your celiac I would ask around and find a good naturopath in your area. My naturopath through bioMiderian testing was able to tell me exactly what wheat’s were triggers for me in addition to a whole world of everyday pantry items that were not helping me.

    I send you the biggest *HUG* for everything you’ve been through. It’s a long and frustrating journey but if you don’t have your health you have nothing.

    Be Well,

  8. Omg this post makes me so thankful I have a Mayo Clinic in my state with real doctors who understand Celiac and the PROPER way to diagnose and give follow up care. These doctors should be ashamed. Not just because of a lack of knowledge, but mostly poor patient care. Geez, I’ve been treated like crap by other doctors before, so I feel the pain. But about an intense autoimmune disease? Never. Go to Mayo Clinic and find a real doctor who cares!!!!

  9. I feel that there is a severe lack of education among Doctors when it comes to Celiac Disease. At least from a Canadian perspective. I also find that some Doctors have a personal agenda of sorts…they have their own view and are not open to education or different perspectives.

    My mom was diagnosed over 10 years ago. After her scope, she was told that she has Celiac Disease and to go look it up.

    I was diagnosed a few years after my mom, and thanks to her as well. My family Doctor is usually spot on when it comes to health issues. If he is not familiar with something, he looks into it and gets back to you. The Celiac thing, not so much. My blood work came back a false negative and he suggested just going GF to see if I feel better. My mom said not a chance and insisted that I needed a biopsy for a proper result.

    In the end I had a biopsy and it came back that I’m Celiac. This was 11 years ago. I have had no follow up care regarding it. I don’t think the medical community really knows what to do with us. Why are we brushed under the carpet when Celiac can lead to more health issues in the long run?

  10. We’re all human, even those of us who have gone to medical school. So I can understand someone not knowing everything.

    My GI guy, who diagnosed my CD (and found other problems my docs had missed), wrote me a script for “Google-itis” and provided me with reliable websites to use for resources because, admittably, his expertise stopped at diagnosis. He also told me to look for support groups. Was I disappointed that he was not a good resource for medical info? Yes. Was I glad he didn’t act like he was an expert? Double yes.

    But for any doctor to discount a request for testing? To treat symptoms without investigation into the cause of the issues? This is not acceptable.

    I agree with the thought that there is no money in a celiac diagnosis and this removes the motivation to follow up. However, I think the main inhibitor for the classically trained medical community is fear. It’s fear of the unknown, fear of the uncontrollable…

    … fear of the realization that a very expensive medical degree can not, indeed, teach you everything.

    1. I believe you nailed this one Gluten FreeK – human failing coupled with fear…. not a great combo for patients and sadly all too common.

      I keep reading stories like this and think – wow! just wow!

    2. Wise words, GFKIM

      I love my new GI guy. (The GI guy I had for 12 years left me UNDXED and in pain–long story already told on here somewhere)

      He has no “god complex”. He sees how others in his practice screw up with botched celias DXes .He knows this happens all too often and he told me the other day “doctors do not know everything”.

      He has told me repeatedly…. he views me as a “celiac textbook” –and he learns more from me than anything he has read. Because my symptoms are so varied and extraordinarily complex and I really did nearly die from it, he has no “baseline” to work with. They simply do not teach this in medical school. It is still viewed as a “rare childhood disease”. My PCP doc told me the same thing when he finally DXed me in 11/10– when I TOLD him- LOOK, this is what I have!! He said, I am sorry; I did not know how it manifests in adults. I went to him with symptoms for 12 years (and he has 3 kids with CD) ;(

      My new guy takes any articles I bring him with joy— and he reads them and talks with me about them. I love our 3 month check ups!

      When he met me, he read my many reports and my symptoms list ( 4 pages long) and my 3 year saga trying to find an answer and he looked at my pics from when I was more plump and he saw my emaciated frame. He just held my hand and apologized” for his profession” for having left me unDxed my entire life. He had tears brimming in his eyes.

      I love this guy!! I send everyone to him. He did not plan on specializing in celiac, but he takes it on as a mission now.

      There are good doctors. It took me 25 years to find him.
      I always tell people…find a celiac-savvy doc to provide follow up care.
      No one should be left to figure this out alone.

  11. Don’t let bad doctors get you down. When I was first diagnosed over 15 years ago, the gastro doctor called me and said, “you have Celiac diesease.” I asked what that meant. He said, “you have a regular doctor, ask him” and then he hung up on me. I asked my regular doctor and he suggested I find a dietitian. I also was seeing a hemotologist to get daily infusions of iron and he was my lifesaver. He was in his seventys and about to retire, but he not onlky helped me understand what I had, but also asked me what web sites I used and what books I found helpful, so he could pass on this info to others with the same problem. A couple of years later I went to see a new gastro doctor because I wasn’t sure if there should be some follow up. He asked if I was having any problems. I told him I wasn’t but thought I should have a gastro doctor following up on my disease. He looked at me like I was crazy and sain not to bother him is I was having problems. As you can see I saw the good, the bad and the ignorant. I now only see doctors who get it. If they don’t I tell them and walk out. There are good ones, but sometimes they are hard to fine.

  12. This sounds so much like my story. I was diagnosed with pernicious anemia and got progessively worse for almost 20 years. I got weekly shots, had numerous neurological problems, and had more tests than I can recall. Finally, I pulled up every neurological and autoimmunce disease on the NIH and May Clinic websites and compared my symptoms to the diseases. I was desperate! I narrowed it down to four diseases that could cause my symptoms and insisted on being tested for them even though my internist was sure that I didn’t have any of them, especially celiac. Sure enough, I did have celiac. My doctor emailed me with the diagnosis and told me to go gluten free immediately. That was it. I had to insist on a referral to a gastroenterologist. Neither my internist nor the my gastroenterologist thought I needed follow-up care. They both just said that I should follow a gluten-free diet. Everything I found out about the disease was from my own research. It wasn’t until I fractured my pelvic bone (the fourth fracture in ten years) that my internist sent me for a bone scan, which indicated osteoporosis, a result of spending most of my life with undiagnosed celiac disease. I’ve learned that I have to be proactive and insist on the care that I need. It is really very discouraging, but that is often what is necessary.

  13. If you live in the San Francisco Bay Area, I highly recommend going to Stanford Hospital to see Dr. Nielsen Fernandez-Becker in Gastroenterology. She is their leading Celiac specialist and CARES DEEPLY about Celiac and the suffering we go through. She is the one who tested me and vetted my biopsy (also done at Stanford) with Dr. Gray who is a Professor Emeritus at Stanford in the Gastro unit. Stanford also insists that you meet with a nutritionist to talk through changes that are required to heal the gut. The support Stanford offers is comprehensive and they totally get Celiac.

    She is also leading her own Celiac research in partnership with other doctors. I gave her 14 vials of blood for her study and will continue to support her in any way I can.

    Her contact information:
    Dr. Nielsen Fernandez-Becker
    Stanford Hospital
    Gastroenterology Clinic
    900 Blake Wilbur Dr
    Garden Level MC 5355
    Palo Alto, CA 94304
    Tel (650) 736-5555

  14. My story: Developed anemia, sent to a gastro doctor who said I was either losing blood somehow or not absorbing iron. He did bloodwork and ordered a colonoscopy and endoscopy. I had to wait 3 months for the procedures and when he showed up, he didn’t have my chart with him. I asked, how did the bloodwork come out and he said “you do not have celiac because I would have remembered that”. As I was coming out of the anesthesia, the nurse handed me a phone. It was the Doctor who had gone back to the office and read my chart. He said, “I just looked at your bloodwork and you were off the charts. You have celiac. Stop eating gluten.”

    No follow up. No recommendations. No mention of a support group. When I went to my PCP after a year, I asked her to do the blood test to determine if I am diet compliant. She refused. She said that it was only for diagnostic reasons and not on-going treatment.

    I have armed myself with knowledge from my support group, conferences, reading, etc. Anytime I go to the doctor for anything, I remind them that I am celiac and I ask them how my current situation might be impacted by that.

    It is frustrating to have a medical community that isn’t all that informed about celiac, but, I know I don’t know everything about everything and I don’t expect my doctor to know everything about everything. But, my original PCP who diagnosed me with anemia, quickly put me on track with my gastro who then provided my diagnosis. Time from original anemia diagnosis to celiac, 6 months.

    (And, just for the record, I received my dianosis on July 1st but I didn’t officially go gluten free until August 1. I needed that time to come to grips with my loss. Since August 1, 2004, I have not cheated once on this diet. I’ve made mistakes….but I’ve never knowingly eated gluten.)

  15. This story has me so upset because it is all too familiar.

    You do not have a definitive diagnosis because the doctor has failed to follow protocol.

    TTG IgA is an autoimmune antibody directed at your intestine (and assuming you don’t have some other autoimmune disease like type 1 diabetes or rheumatoid arthritis?) , it indicates celiac disease.

    If you feel better off gluten and the TTG falls on the gluten-free diet (a test that should be done 6 months AFTER being given a diagnosis), you definitely have celiac.

    YOU SHOULD HAVE BEEN biopsied immediately. 3 samples is insufficient. They should take 9-11 from various parts of the intestine for accuracy.

    The University of Chicago, points out that the TTG test can sometimes be inaccurate in people with other autoimmune disorders, such as type 1 diabetes or thyroid disease. Therefore, the University of Chicago recommends that follow-up testing include measurement of two types of anti-gliadin antibodies, AGA-IgA and AGA-IgG.

    And since a high TTG can mean other autoimmune diseases, you should have been checked for those as well.

    If you cannot “tell you have been glutened right away”, it just means you have silent celiac. Lots of people have no gastro symptoms but they have OTHER symptoms of celiac. In your case, severe anemia is a giant clue.

    No one has tanked iron levels without a CAUSE.
    It’s not like you are losing blood through menstruation.

    You have to find a doctor to help you. Take your celiac test results, your blood work results (showing the iron deficiency) and get yourself to a GI doctor ASAP. Call the local celiac support group and ask them who their medical advisor is–that’s who you want!!!

    You have to stop using the family toaster and shared utensils, hon. You really need to learn what to do to manage the disease.
    I can point you to some books or articles, if you wish.

    And follow up care involves lab work including the following:
    a CBC, CMP, SED RATE, IRON/FERRITIN levels, B-12, Folate levels and THYROID panels. Barium studies of the GI tract, too–if warranted.

    A allergist/immunologist is not a celiac specialist. YOU NEED A GASTROENTEROLOGIST –as you may need further biopsies.

    (THESE CAPS, btw, are not me yelling at you 🙂 It’s just me being angry on your behalf because this was botched from jump street and it is inexcusable. You deserve better.

    1. Get a bone scan, too. ASAP. Lack of calcium absorption due to Celiac-induced intestinal damage is a serious possibility.

  16. My story is very similar to the ones here – self diagnosis, no follow-up, no dietitian. It iwas a very frustrating and lonely time. Now I am approaching my 2nd year and feel much calmer. I think it would be great to have a mentor like in AA to guide you through the first year. I joined a support group and didn’t find it there either. I’ve found more support on blogs than anywhere. Thanks to all you gluten free bloggers out there that offer support to fellow sufferers. The recipes, the rants and the articles are invaluable. Know you are helping many people.

  17. I know that feeling all too well. I was diagnosed WAY back in 2005. lol I could tell you quite a lengthy story about what I went through to get that diagnosis as well, but I will say this, I am disgusted and floored by the behavior of medical ‘professionals.’ When I was diagnosed 7 1/2 years ago there was so much LESS information out there and products even. I was hard-pressed to even find GF bread anywhere near where I lived. It was very hard on me and now I’ve just gotten used to it, but I can completely relate. I had actually seen a GI doc on multiple occasions before the diagnosis that finally did diagnose me, but then just sent me a letter stating that’s what I had. No come back and check with me, no sending you to a dietitian, no go to these internet sites….NOTHING….NADA….ZIPPO. I felt lost and overwhelmed, as I really had no idea what celiac disease was. Needless to say, I cannot believe that all these years later things still don’t seem to be any different. I even had my ‘new’ doc say to me recently that there is STILL not a lot known about the disease. You go over it briefly in medical school, so you know it exists, but that’s about it. Unless you can find someone that ‘specializes’ in dealing with celiac disease, it is difficult. You have to do A LOT of work yourself. The most beneficial thing for newbies might be to find a support group, if there is one in your area. They may be able to give you a packet of resources….at least that’s what we do in my group.

  18. Thanks for all of your comments and advice!! I will try to call the gastroenterologist’s office to see if they can get me in on an urgent basis. The referral was made about a week ago, but I was told it may take up to a year. Once I have a better idea of how long it will take to get in, then I can figure out when I need to go back on gluten for the testing – this is necessary, right?

    Again, thanks for listening and offering assistance!!

    1. A year??–is insanely wrong, but it is what it is, I guess.

      Yes, Jackie. Since gluten causes the antibodies to rise and blunts the villi in the small intestine, a gluten challenge is often required to get the most accurate result when testing for celiac. I do not think it wise for you to ingest gluten for a year though—that would be dangerous.

      I could never survive a gluten challenge, but since your symptoms are less troublesome, you are a good candidate for a gluten challenge.

      Ask the doctor’s office how long you need to “gluten up”, but the prevailing thought from the celiac research centers here in the US is at least 6 -8 weeks. Eat up for best results.

      Best wishes and I hope you will keep us posted.

  19. I started writing a long tale of woe of my own long odyssey to diagnosis and all the incompetent medical people I met on the way and since, but I think most of us have these stories. It’s so depressing. I’ve always thought that if there was an expensive pharmaceutical treatment for celiac, with pharma reps dropping off samples and “educating” doctors about the health crisis that is Celiac, then doctors would test everyone and diagnosis rates would skyrocket. But because it is a nutrition-related disorder, doctors know little about it and have nothing but distain for the people who have it… or suspect they have it. What they have been taught in medical school is that digestive disorders are often psychosomatic in nature. I spent years going to the doctor, begging for help for my constant GI and other symptoms. And was told that I really needed to be on Prozac. No tests, no diagnostic curiosity. Just take Prozac.

    I’ve heard so many bad GI doctor stories that I’m not sure I’d trust one unless that person had a lot of experience with Celiac and gluten sensitivity.

    if you’re going to survive this, you’re going to need to do a lot of your own research. Most medicos are not well informed. They don’t have any more answers than you can find through Google. And I want to second the recommendation that you must start taking cross contamination seriously. No more shared toasters and colanders. You must be fastidious about crumbs. I suspect there’s a possibility that you might be getting cross-contaminated just enough that you are continuing to have symptoms that you’re not recognizing as such. When you do get glutened, it is not as obvious because you’ve been getting glutened already, if that makes sense. I know for me, it took a few months to really learn what to avoid, and once I did, the GI stuff improved a lot. Before that, all I’d ever known was my sick gastro system. I didn’t know what normal digestion felt like. I didn’t know what to look for. I didn’t even know how I’d know if the diet was making a difference. Gluten exposure didn’t seem to make me that much sicker. It turned out that once I got scrupulous about the diet, the difference was huge. Good luck.

  20. After diagnosis in 1977, it wasn’t until around 2007 that I had any sort of follow up. My current doctor told me there wasn’t a lot he could do unless I had symptoms of some kind. I really don’t know how accurate that is, but seems very similar to what the doctor who diagnosed me said which was to stay on the diet and I’d be fine. I really think I needed something like counseling- well, the whole family, especially my dad needed counseling rather than just a handshake and mimeographed list of what to avoid, seeing as how it was such a life altering event. (When I moved out of the house my brother asked “Can we eat normal food now?”) We celiac’s have to be incredibly responsible, pragmatic, insistent, coherent, humorous, resourceful, patient and not afraid to tell a doctor or anyone else to take a flying f- at a rolling donut because this OUR life, like it or not. None of us asked for this, and I don’t think, well I take it back. I know no doctor, unless they they themselves have the disease, knows what its like to have to constantly ask about ingredients, read about ingredients, bug people about ingredients, plan ahead, research, have alternatives and all the other crap we have to contend with just to eat without harming ourselves on a daily friggin basis. And 11+2 is not 14, dammit!

  21. Hey girl! You have a choice here. Let me tell you what happened to me to help you decide what you want to do.

    My blood test showed positive for Celiac (my number was 140) so my GP told me to start eating gluten free right away and referred me to a GI specialist. It took almost a year to get in to the GI specialist and after I had made the (difficult) transition to eating gluten free, I came across information online saying not to go gluten-free until AFTER an endoscopy with biopsy of the small intestine. I called the GI specialist’s office and they wouldn’t clarify or give me advice until after I had seen them so I stuck to eating GF.

    The P’ROBLEM with this choice is that you have to eat the equivalent of one piece of toast per day for at least a month in order for your small intestine to show enough detectible damage at the biopsy because it does start to heal once you go GF. Since I had been eating GF for months before my biopsy, I had to start eating gluten again. This is called a gluten challenge. Mine was apparently not long enough to show damage in the areas they biopsied.

    I am not interested in eating gluten again or having another biopsy. All my other debilitating symptoms of Celiac have disappeared and I KNOW when I have accidentally eaten gluten. My GI specialist and I are 100% sure I have Celiac based on everything else even without the confirmed biopsy. After two years gluten-free my number went down to 75 and after four years gluten-free my number came down to 23. That’s almost normal. I wouldn’t dream of EVER eating gluten on purpose.

    So basically, if you care about confirming your diagnosis with a biopsy, don’t start eating gluten-free until AFTER that. If you feel better eating gluten-free and can’t imagine continuing to eat it, fine. The gold standard for confirming the disease is the biopsy though so there may remain “some” clinical doubt as to the diagnosis without it.

    It’s up to you. Good luck! I hope you start feeling better soon! I KNOW you will!

  22. I enjoyed your rant. Currently, I feel like ranting too. I have been dealing with multiple autoimmune diseases for over 30 years. My husband is a Family Practice Physician & I am an RN. I am so tired of sorry ass physicians who just blow you off. I saw my “so called” immunologist today. I have been suffering with oral thrush for 6 months. He basically told me he’d see me in a year. What? He told me when ever I needed a refill on my Myceline Troche, just call. Are you kidding me? He told me there was just nothing he could do for me. I guess I just need to learn to live with it. OMG, what is wrong with these jerks? I suffered for years with urticaria with blisters. Not one physician could give ne a Dx. I finally dx’d myself with dermatitis herpetiformis & went on a glutenfree diet. Solved that problem.

    If I were younger, I would return to school & become a physician & specialize in Autoimmune Disorders. I am sure I am not alone, but finding a physican who even gives one shit about autoimmune disorder is few & far between. The AMA should designate a new specialty, Autoimmune Practice Physician, APP. I just want one physician to treat my autoimmune problems. I believe I am not alone! There are Diabetes specialists, there are allergy specialists, there are rheumtoid specialists, there are so many specialists, but the Immunologist, who you would certainly think would be the specialist that would treat all our problems just brushed me off. What a waste of my time & effort. I’m on a mission, if it’s the last thing I do, I will find a physician who will treat me with compassion & respect! At this point I know more than they do. It’s outrageous! I am not sorry for my rant, only sorry that the medical profession is such a sorry mess. It’s only going to get worse with Obamacare, mark my word. Good luck to all who are suffering.

  23. Wow, my diagnosis stemmed from anemia as well. I still get iron infusions about every 6 weeks. When I didn’t have insurance, I had to deal with doctors with little or no knowledge of Celiac who saw me as a nuisance. I was working in Los Angeles at the time of my diagnosis and went to Cedars-Sinai because it was close and I had good health insurance. The doctor sent me to a dietician and insisted on follow up visits.

    Hang in there! The most important thing to remember is that you can never have gluten again. You’ll find alternatives and you’ll find substitutes that you love. Just give it time.

  24. UPDATE: I had a call that I have an appointmetn with a GI specialist for a scope on October 18th. I started eating gluten again on September 24th, so hopefully that will be long enough.

    Thanks everyone for your stories!! I will post again after I meet with the specialist!!

  25. Eat as much gluten as you can tolerate.

    Would you please have a chocolate croissant for me? It’s the one thing I miss and it is impossible to replicate. Thanks!:)

    Best wishes— and I hope the gluten challenge does not make you too ill.

  26. Hi all,
    I printed out each of your letters as a source of inspiration for me. I feel like a little ninja in the hospital when I try to diagnose patients with Celiac Disease.

    I am a young doctor who went from being thrown out of medical school for ataxia due to celiac disease to now teaching GI specialists, infertility docs, neurologists, rheumatologists, geriatricians, and family medicine doctors about the extra GI manifestations of celiac disease. Alot of them thank me and are gratefull. The ones that have not, will thank me soon enough after I shove your letters in their faces. Very polite shoves, I promise. I am a dork, and a self proclaimed advocate for my patients.

    I saw my first doctor when I was 10 years old. The process of finding my diagnosis did not begin until I ordered my own bloodwork during my training in medical school. I kinda snuck it in because none of my doctors would order the bloodwork when I saw them as a patient.

    Thank you for your honesty and words of inspiration. 🙂

    1. I am curious about your ataxia. Could you please share your story further? It would help me not feel so crazy! It seems possible that I have this Gluten Ataxia. This issue is the most distressing for me. I don’t feel like it is even acknowledged by the doctors so far, except to say it is a stress reaction.(The neuorologist asked me to walk faster & faster till my knees wouldn’t even go straight,. He took a video on his cell phone and then just smirked at me for the rest of the appointment)…
      I thought I might have periodic paralysis- HypoKalemic(?) Their situation seemed similar to mine. There are times that I cannot move or my body moves involuntarily. Sometimes it seems eating does trigger this, but not consistantly. I bought a cardy meter to test my own potassium levels, but really there is no way for me to execute it during an episode, as I cannot think or move enough to perform the test in “those episodes”..
      My GP usually just ends any appointment asking me if I want to back to ortho for injections in my back or Physical therapy. But, now we are going to GI for help.

      I feel like I get my core muscles very strong, then poof for no reason, I have pelvic instability.

      Of course, my issues are extensive, but this walking thing is the worst, unpredictable and exhausting. I am very curious about this aspect of the whole gluten thing.

      Thank you for sharing!

  27. Kayla, my leg muscles used to seize up so that I couldn’t even walk. My internist sent me to two different neurologists, but they couldn’t find a cause and just told me to drink more water and take magnesium, neither of which resolved the problem. My neuromuscular problems are what caused me to research for myself all autoimmune and neurological diseases in order to find out what was wrong. My doctors didn’t have any answers. I’m not sure where I would be now if I hadn’t asked to be tested for celiac. After about two months on a gluten-free diet, my neuromuscular symptoms started to subside. I had to go completely grain free (except for rice) before I got completely better though. I still have problems with muscle cramping, but that is minor compared to what I was going through before. You may want to try going completely grain free for a while, just to see if it helps. Just because the medical community doesn’t understand your symptoms doesn’t mean that they don’t exist, and they shouldn’t assume that it is stress just because they don’t have an answer. I guess we should just be thankful that they wash their hands now and that they aren’t bleeding us – proof that medical expertise changes.

    1. BlueWillow,

      Thank you for your post. I am glad to hear that your symptoms started tp resolve after 2 months, gluten free. That gives me hope!! And if It comes down to grain free, then so be it too, just to have yourself back can seem like a miracle!!

      My ataxia is like a drunk walk.
      hard to stop and start walking sometimes.
      Hard to maneuver around things, or just turning.
      It is exhausting to energy depletion
      It is causes me to focus on walking so much so that I forget why or where I am walking to in the first place.
      I cannot stand straight up, like instead of a spine, I have a ball in my torso and lean to one side or the other.
      It creates back pain by spasms after pushing myself, my muscles cramp up.
      I have to laugh, because after an extensive meditation I entered into a very blissful state. I looked up to my friend and said, wow, lets dance. But when I got up, I forgot my left leg was in “lag” and fell completely forward. Oops. Forgot I can’t walk. LOL
      That is just how this is for me. No answers for why this occurs.It is interesting that Gluten may be a culprit.
      I have tried a low calorie diet. meat,rice /taters/ fruits / veggies, & not so often ; breads, beans etc. All fresh & whole, no processed foods. That lessened the severity, frequency & duration, but not eliminate it. I had to eat regular food a couple of months ago and have been suffering still. I have some sort of upper right rib pain that is bringing me in for GI consult. I have HJ bodies, slightly elevated WBC & Low albumin. I don’t like the word diet, but if it makes me “me” again. I am all for it. I know that I should not start the gluten free uniti after testing. Thank you for all the posts and sharing. You are all survivors!

  28. Hi Kayla!

    The balance problems can come from peripheral neuropathy, damage
    Of one’s nerves. The muscle cramping can come from hypokalemia, which is not fun! I am not a runner, and when I get my cramping I think to myself how much more would it hurt?!?! There’s a very close association with restless leg syndrome or just anemia as well and that too, at night, is very uncomfortable. It won’t cause overt leg cramping but feels like tiny twitches at night-which is also uncomfortable.

    When gluten ataxia was listed in Epocretes and Up to Date, which are like the bibles for the medical fields, I am not gonna lie. I was choked up. It took science many years to legitimize what I felt. This part of the celiac disorder spectrum is the most poorly understood, but scariest because there are no long term studies to see if a Gf diet subsides these symptoms. Kinda of super freaky and scary. Most currently attribute it to multiple variables such as: , b12, folate deficiencies, and folate deficiency. Peripheral neuropathy due to the previous and in addition to nerve damage due to your antibody load. and cerebellar damage. I saw neuro-ophthalmologists and movement disorder specialists to adress this as a patient. They didn’t know. Ecause at the time no one knew either. But the change is coming, be it slowly, though.

  29. Yes, hopefully, more neurologists will be able to DX celiac from gluten-induced ataxia. I saw 3 of them before DX and they had no clue what my problem was.

    “Dr. Marios Hadjivassiliou, a consultant neurologist at Sheffield Teaching Hospitals in the United Kingdom and the neurologist who first described gluten ataxia, says as many as 41% of all people with ataxia with no known cause might in fact have gluten ataxia. Other estimates have placed those figures lower — somewhere in the range of 11.5% to 36%.”

    Here is a rather large collection of Pub med articles on the Neurological manifestations of celiac, including gluten ataxia


    and a quickie explanation:


  30. UPDATE!!! I had my endoscopy today. It started with the gastroenterologist asking for some of my story. It was clear to me that he had been informed of my unhappiness with my family GP. He said she had done nothing wrong. He said that she is probably right, that it won’t be celiac because I have constipation and not diarrhea. He explained that there are many other conditions and lots of other diet changes I can make to make me feel better. I let him ramble. I told him I would love for the test to come back negative and for me to not have celiac disease and that I would be pleased to try any type of diet! I’d be thrilled to be told my blood tests were among the 10% that are wrongly positive – his words!!

    He said that he planned on doing six biopsies. He advised the results would be in in about a week. He asked where he should send the results. I said that if I couldn’t see him for results, to send them to my home address. He again told me that my doctor didn’t really do anything wrong and that I shouldn’t have left.

    Anyways, so down my throat goes the camera. The look on his face was interesting. He completed one biopsy, took the camera out, and told me that there was no need to wait for the results. He said I was a definite celiac and that I needed to immediately start a gluten free diet. He said that he would send a referral through to the dietician and that he would see me again to do another biopsy in 9 months. He said that he should be able to see some improvement by then, but that he does not expect that it would be completely healed by then.

    So yeah!!! And BOOO!!

    I am sad to have been diagnosed with celiac disease officially.

    However, I am thrilled at the same time because I knew in my “gut” (pun intended) that I was celiac – I just wanted some direction and follow up care!!

    This has now been achieved!! Score one for the patient!!!

    Thanks for your help and direction!!

    1. Jackie.

      I am glad you have a confirmed diagnosis, but how he could tell by just looking at your small intestine is perplexing. Villous atrophy is not usually visible to the naked eye. This is why the biopsy is necessary-to determine what Marsh Stage it is.

      Unless your damage is so extensive.. Did he say?

      But if you’re comfortable with his DX, then boo! ;( sorry honey,

      but, WHOOHOO for an answer!! 🙂

      and welcome to the fold!!!

      If there is anything I can to help, please feel free to call on me.
      Best wishes for healing,

    2. Hey Jackie. First of all…YOU WERE AWAKE DURING YOUR ENDOSCOPY?

      Yikes…hope it wasn’t too uncomfortable.

      I’m sorry about the diagnosis but am happy you have an answer. As you start your journey, call on me for any help you might need.

      May your celiac journey be an exceptional one.

  31. He said there was extensive damage. I am assuming that there was, and that it was visible to the naked eye, because he pretty much told me before going in/down that I didn’t have celiac – plus he only took one biopsy. He originally told me the results would take a week. Only after he was looking and took the biopsy did he change his story.

    1. There is a part of me that grieves for you and a part of me that is dancing around my living room because you have VALIDATION.

      When I got mine (after 3 years) I did not know whether to laugh, cry or wring the bloody doctors’ necks who had left me to die.

      Mostly, I just went” YES! YES! YES and screamed out loud: “I told you so, you incompetent asshats”.

  32. Hi, the links are very informative. I’d recommend sending letters to the physicians who didn’t recognize your diagnosis. It would be awesome if you guys could lead a little continuing medical lecture series for their staff and colleagues. As patients, that’s amazingly powerful and fufilling.

    With respect Hadjivassiliou his work wasn’t really followed up with a larger study, which is unfortunate. Has any one been told a out the prognosis of gluten ataxia when its due to cerebellar lesions. I have heard that a GF diet does not cure it. That scares me. I get yearly MRIs to follow up on it…

    1. Oh, all the docs who missed the boat with me for 25 years received letters. I received no replies, except one lame phone message, but no admission of his neglect.

      Why would they reply? Admission of any wrong doing would open them to a lawsuit. I did not expect much, so I was not surprised.

      My current celiac-savvy Gi doc is my best ally now. I have been my own best advocate for so long. He wants me to write a book, speak to groups, etc….and I try, but right now, I do all I can on celiac.com, in my community and here. I am still healing. I get tired and my bones and muscles are still impacted deeply.

      In answer to your question about lesions on white matter healing, I have read mixed opinions, but the REAL people who live this —report on c.com, that they have good results and recover.

      Takala, Ravenwoodglass–check their stories.

  33. Okay, I’m not sure if this appropriate for here…
    I hope I don’t get blocked. Just delete it if it is…

    I read this on the backside of bathroom door in a dingy bar

    “here I sit
    Broken hearted
    I came to shi$
    But to my despair
    Only farted”

    I loved it and laughed in the bathroom stall, because I was GF for about 3 months and my GI symptoms were improving!

    I gave that poem a title, yeah. I kinda vandalized stuff that day.
    Title: “Gf diets don’t fix broken hearts.”

  34. Hi IH,

    What we all have experienced to get a Dx is something that ties us all together. I am sad that you feel violated and cannot trust medical professionals.

    you seem quite informative about the disease process. I hope you one day can come to forgive, and educate those arround you. Not like rubbing thier face in because they did not know.

    Continuing medical education is the harmark of how medical knowledge is acquired. There is humility in medicine, I hope you can see that. When I saw my 35th Neurologist, he too did not know about my gait issues. I told him about the research in Europe and he kind of scoffed at me. That’s that duche’s loss.

    There as as$holes in every profession, the lack of kn owledge does not make an as$hole. The inability to want to learn and change does.

    What do you mean when you say the REAL people that have gluten ataxia in your previous post? Arent you real? 🙂

    1. I know you do not know me, so I will tell you that I spend the majority of my time educating people about celiac.

      It is how I channel my anger and turn it into something positive.
      I do this so no one else goes through what I did.

      I did not “rub anyone’s nose” in it. I made it clear to them they screwed up. They should be held accountable. They should take what happened to me and learn, so they recognize celiac symptoms in others. You have no idea how arrogant some of them were.

      These were specialists I consulted and I asked repeatedly if it could be celiac. NO, they said, despite my 90 lbs. weight loss, hair loss, neuro symptoms, anemia and dozens of other
      symptoms. I lost 3 years of my life and we spent our entire savings looking for answers.
      It’s a long story already posted here and on celiac.com.

      So, please do not tell me about the humility in medicine. I have not seen any of it.

      My new GI doctor and I discuss celiac all the time. He is different. He accepts articles from me when I bring them. He loves to learn.
      He is the kind of doctor who looks at the whole person, her history, her symptoms– collectively. He never suggests that symptoms are in anyone’s head. I send people to him all the time so they can get the care they need and deserve.

      I trust him.Period.

      And yes, I am real, too! I was giving you examples of others who had white matter lesions and ataxia who have healed and who have minimal residual issues. Thought that would encourage you.

  35. Im sorry you feel that way about the medical profession. I’m sure what you experienced, as all people of CD have experienced was a scary and difficult time. For me it sometimes was a place of isolation and even contempt. Though, I still hope you one day will be able to one day see and experience the humility that I speak.


  36. Wow. My story is similar to many of you. I had to ask for the celiac blood test. (When I went to the doctor before that and complained about my health, the doctor told me “Yo are fine.You are healthy”. How the hell I can be fine with pain and all the other symptoms?) He called me with blood tests results. They came positive. He asked me do I know what not to eat? I said I googled it and he said I hope you will feel better on gluten free diet. If not see me again in a month. So a month later I made an appointment. I told him I don;t feel better, I was asking questions and he honestly told me I know more than him about this disease and he will referred me to gastrologist. It was in September. My appointment supposed to be in November. Due to the Sandy the clinic was closed and now I can’t even reschedule it because rude ladies on the other phone just tell me “There is no appointments.Call next week”. So here I am. Alone with my pain and without answers and help from specialist. What I know is because of my research. But I am often confused as well. One side says this ,the other one says that. It is so sad doctors know so little about this disease and they don;t care about their patients. It is sad we need to struggle on yours one.
    Thanks for blog and people like you guys! we all need each other.

    1. Since you mentioned Sandy, are you in NJ? If so, the doctor who diagnosed me right away is in Princeton NJ. He’s awesome. If you are remotely near Princeton, let me know and I’ll send you his info.

  37. Thank you. I am in NY though. :/ I know there is great Celiac Center in Columbia University. But I can’t afford them. They told me $8.000 for endoscopy since I don;t have insurance. 🙁

    1. I am sorry you have not had very good follow up care, but even without an endoscopy/biopsy, you still have a celiac diagnosis and the only treatment is a gluten free diet. So, you are doing all you can to get well. It may take some time, hon…a lot longer than a few months. Hang in there.

      If you lived in upstate NY, I’d send you to my GI doctor.

      The G dude does not mind if I steer people to this thread I wrote for the newly diagnosed. Maybe it will help a little?


      Best wishes to you.

  38. My son is 4 and a half years amd weighs 13.9 kgs.since 2 years I was shwn him to a paed GI. Coz his weight gain was very slow.so he did all the blood tests amd all where normal including gluten test.he referrd him to a dietitian who gave pediasure and diet chart. He is apicky eater.evn aftr a year his weight is below the growth charts.though his weiggt is imcreasimng bt slowlyhe is hyperactive always playng has no stmch upset or diarrhoea.his irom is normal.now he has booked for biopsy to chk for malabsotption.im scared to do tht procedue for my son just becausr he is underweight n has no sptoms of diarrhea.also he is thalassemia minor.plz help me take the right decision is biopsy required and how safe is it to do are there any complicatipns in the procedure.plz advice its UrGENT.

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Who I am. And who I'm not.

Who I am. And who I'm not.

I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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