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Opinions Requested..gastro Doc Sent Me A Letter...
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21 posts in this topic

"Further to your recent endoscopy the duodenal biopsies show partial changes which confirm a diagnosis of Coeliac disease. The fact that there is no complete resolution of the changes despite you being on a gluten free diet suggest your diet is not fully compliant. This will be addressed further at review by the dietitians. Yours etc"

I was biopsied at 11 weeks gluten free. So they think I should have healed?? Now I'm stumped? I was just having this conversation on here about my biopsy results and felt reassured that I had time left to heal (6-12months).

My gastro doc clearly thinks otherwise, and now I'm worried... Apart from drinking dream rice milk for 2 weeks, I don't believe I have had any other gluten slip ups.

I'm cross. I'm confused. And worried.

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The more I think about it the more I think my gastro is a complete twat.

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I've just looked up on the marsh scale according to biopsy results and it seems that I'm on a marsh scale 3. Not very reassuring!

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The more I think about it the more I think my gastro is a complete twat.

This I agree with - the letter he sent isn't worth the paper it was printed on. Your improved antibodies in April will confirm that you have removed all gluten. If the DGP is not significantly lower - you'll need to take another look for possible CC or hidden glutens.

I'm sure you have already seen the "Newbie 101" thread, but it is a good idea to re-read it now that you have some gluten-free time under your belt.

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I've just checked their dates and I was actually 9 weeks gluten free at biopsy... Thanks GottaSki. Actually I didn't ever get to read the newbie thread... Will do today. But I have been quite stringent (come from a family of severe allergy so used to reading ingredients. Maybe I've missed something else. Must admit I thought rice dream milk was gluten-free)

What a nightmare.

Another bad day today... Just when I started getting over last weeks bad day.

Thanks for replying GottaSki. I needed to hear some sense, sometimes my brain just can't handle it!

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Not a problem - I was a mess during the first months gluten-free - regular tears in grocery store isles, etc. It is not an easy learning curve - even for those with some experience with food allergies.

Go easy on yourself and rest assured complete healinng in nine weeks would be miralculous, not the norm and should not be expected by any GI - sadly Celiac knowledge is lacking even within the GI community.

Hang in there - it does get better!

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A doctor won't take "but the forum said" seriously. Give him info from actual medical experts.

http://www.celiacdiseasecenter.org/C_Doctors/C07-Management.htm

"8. Repeat duodenal biopsy

A repeat biopsy is frequently performed to assess response to the diet, though it is not necessary for conformation of the diagnosis of celiac disease. Some experts recommend a biopsy during the first 6 months after diagnosis. However, if a patient is doing well on the diet, a repeat biopsy early in the course of the diet will serve little purpose. The biopsy may not show sufficient improvement. We recommend a follow up biopsy at about 2 to 3 years to assess optimal improvement. While many patients will have normal biopsies on these follow up procedures, some patients have persistent villous atrophy. This may be due to ongoing gluten ingestion.

Patients who are not doing well on the diet, due to persistent abdominal complaints or diarrhea, may undergo earlier, or more frequent endoscopy and biopsy to assess the status of the celiac disease, or whether there are other complicating conditions such as collagenous sprue or refractory sprue."

http://www.cureceliacdisease.org/archives/faq/how-long-does-it-take-for-the-villi-to-heal-themselves

How long does it take for the villi to heal themselves?

The amount of time it takes the villi to heal themselves is highly variable. It can take from 1-2 weeks or several years for most. Unfortunately, complete healing never occurs for some.

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Thanks for telling me that, about the tears. My husband looks at me incredulously. I feel like a freak sometimes!

I guess it's because I'm still at stage 3 after a so many weeks (but guess you have the t-shirt for that one!), we all secretly hope are efforts are healing us. It's the refractory thing that petrified me I think, it just hangs there in the background.

All the googling doesn't help (I generally stay away now), but it all indicates that in a few short weeks celiac damage is repaired by following a strict gluten free diet. It is even implied on the coeliac organisation in the UK!

Again, thank you thank you, I know you are right.

How dare they mess my day up!

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Remove Refractory from your list of concerns - I don't have it - although it was looking as if I did for a very long time.

You'll heal - just takes time - again MOST are healed during their first year so just focus on your food choices and disregard the negative stuff as much as possible - it is not easy - but is possible.

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I know I keep saying it... But thank you! You've been a life line. Friends can only listen to so much, and my husband doesn't really get it! (I'm working on it!)

I will dismiss the refractory right now, after all as you guys have told me already (I think it was you actually), its way too early.

These gastro docs have a lot to answer for, sending out scary letters with no explanations a d no follow ups for 3 months.

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I didn't post those links to scare you or say you will never heal. They do say many or most take longer to heal. I thought you could use that for your doctor.

I would say it takes at least 3 months to really get good at the gluten-free diet. You have to find things you think are fine but aren't, replace your butter tubs, toasters, teach others to be careful with their crumbs, etc.

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SkiLisa and Karen are giving you brilliant advice, and I will just add:

It takes as long as it takes.

Sorry, but that's the truth. This is not a road race, but a healing journey.

My GI doc (a celiac-savvy and compassionate one) says "every year is a healing year"

I took a long time to start absorbing again. But I'm getting there!

You are on the right road! slow and steady.

Forget the impersonal (probably) standard form letter from the doctor.

Makes sure you are not getting CCed somehow (and do read the Newbie 101 thread--all those special links and stuff on there? boy, that person sure sounds smart!)

Worrying is not good for autoimmunity anyway. (and it gives us wrinkles--blech! who needs those, right?) :)

.

Just continue to "do your gluten-free thing" and hang with us.

You're going to be okay! .

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Here's where they get this idea that it takes 7-10 days ( that's what my GI said) :

When my hub had a colonoscopy and they removed a polyp, they said it takes 7- 10 days to grow the little scraped place back. What they aren't taking into account with Celiac is that, just because you stop eating gluten-free, your body may still make the antibodies for weeks or months. Everyone is different. If it takes 3 months to really get the gluten free diet down, you are making antibodies for those 3 months. Maybe not as much.

3 months isn't unreasonable to figure this diet under control. How many people baked a gluten-free goodie and then remembered that, in the gluten days, they might take the measuring cup from the flour to the sugar? Or one I have heard many times - corn flakes are just corn. I don't see wheat on the ingredients. They missed the malt. Habits must be re- trained - licking the pb knife after making son a gluten sandwich.

I'm assuming these doctors gave you no real instruction of the gluten-free diet? If they accuse you of cheating at your next appt, ask them to help you figure out where you are going wrong. Because you are doing the best you can.

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Thanks Irish heart. I am scrupulous to prepare my own food on surfaces that I have cleaned but the rest of my clan are not gluten-free (unfortunately for me)... I think if I were to get cc'd it'd be from that. My diet is pretty basic with my only treat being baby organic crisp chip things, gluten free and full of air! Also red wine. The rest is whole food. And im veggie. No dairy caffeine sugar blah blah! I don't share marg (don't eat it anyway!), or any other goodies, have my own pots etc but I will read up on the newbie to see if I've missed anything.

@kareng. Thanks for all of that. Your link has reassured me somewhat! Going by that, I'd be surprised if my antibody levels had even come down much by now (I'm 13wks gluten-free now). I will go back to that website too for further reading.

The doctors gave no guidelines about following a gluten-free diet, but I have been researching myself and come from a background of anaphylaxis etc so am used to being ultra cautious. Actually I do remember now eating some mints the first week gluten-free and realising they prob not safe!

So it IS safe to assume I have much longer to heal than the stupid a*sewipe doctor said.

Why oh why do they scare you? I am wondering if the UK docs are properly up on this stuff. Maybe I hit a bad one? Actually that'll be my second bad one since September as I changed due to the previous one being incompetent.

One question then before I go... The only thing troubling me on an ongoing basis is loose bm. I don't think it's now called diarrhea as there is no increase in frequency. Could loose bm indicate poor healing? Poor digestion? I guess I consume a fair amount of fibre being veggie. But seriously do not know what a normal bm is anymore?? What should it be like on my kind of diet?

You may all go and polish your halo's, you've been angels, as I think I may have slit my wrists by now without you all.

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Hiya I have found UK doctors a mixed bunch tbh, I get what I can from them but most of my learning comes from here and reading. 9 weeks is not long enough.

I hate to say it, but since I told my husband that the whole house had to go gluten-free if I kept getting glutened, I have been much better. It wasn't that he was consciously lax, but it is a good incentive :). I found a few things I needed to sort too, like going between task making.kids lunches, I now wipe my worktops and table with damp kitchen roll the minute they are used etc.

Yes, these guys rock.

I did foot stamping as well as tears :).

C UK seem a bit odd about some things, I tend to double check their advice, but their food directory is helpful getting started.

Keep at it!

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Where abouts are you Mindwarp?

I found C UK a bit strange on advise, and they really push the gluten-free products too! Only my tcm practitioner (he's brilliant) gave decent advise about food and cutting the crap. He's the one that told I could eat whatever I wanted! As long as it wasn't processed, sugar, diary or contained caffeine. Oh and he said I shouldn't eat bananas or potatoes. I've ignored the last bit of advice as it was just too much being veggie too. And i love potatoes.Can't have nuts or lentils in the house because of my sons severe allergy. It's tough!

But any way (oops ramble on!), even my local doctor looked strangely at me when I said I had cut out dairy!

C UK is also full of people that have healed quickly! Or at least seem to have because they say how great they feel and how great the gluten free products are.

I guess there will always be a minority (like me for example) that just don't heal quickly in 2-3 months?

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Pediatric GI told us this week that our daughter will take 6-12 months to heal and that there's no reason to look before then because it's invasive and they don't expect it to be miraculously fast. Hang in there!

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Lfitts, 6-12 months! That's exactly what I thought! Thanks for that. I do believe we are very behind on celiac here in the UK. I have had to spoon feed my docs bits of information from here. Some look at me like I'm crazy! (Especially when I say that I have cut out dairy and caffeine etc.)

They all tell me how lucky I am to live in the UK and have so many foods to choose from in the supermarket! Ha!

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I don't get it. It takes up to 2 YEARS to show recovery. Sure, the numbers are going to go down during that time, but anti gliadin antibodies have a half life of 120 days. This means that every 120 days, your numbers will go down by half. Look up the wikipedia page on "anti gliadin antibodies;" this info is all there.

You didn't provide much of a timeline as to when your biopsy occured, when your diagnosis occured, when you stopped eating all gluten, etc so I can't say much other than that I've already said.

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Thanks Seeking, I've just had a quick read and it's very interesting... Will look into it properly as it seems that I'm gonna get pretty much zero support by my doc.

(I was diagnosed with celiac Oct 17 with blood work.. Went gluten-free as they messed me around terribly, and I was so ill. They biopsied me dec 15, at about 8-9 weeks gluten-free, it confirmed celiac marsh stage 3.)

So they basically insinuated that because of the severe damage found at biopsy stage that I could not have been gluten free as I should have healed mostly or completely.

It's pretty hilarious really as they have only just sent me for my FIRST appt with a dietician!! Tomorrow! After 4 months?! Apparently I am being non compliant with the gluten free diet.

I'm looking forward to this appointment.

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I had a dietican appointment recently, and found that she didn't know much about celiac(e,g, said that I souldn't need vitamins etc as long as I was eating a healthy diet - er, never heard of malabsorbtion???) but she was helpful on a general level to make sure that what I am eating gluten-free is nutritionally balanced. I basically told her what I was going to eat, and we tweaked it a bit. They seem to be very keen on their 'balanced plate' approach. Very hit and miss here.

I don't touch the prepared gluten-free foods now. I kind of wish I could, for convienince, but I feel much better without. Still can't make out c-uk. I have a shiny new unopened directory beside me :)

Good luck with the appointment

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    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
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