Marsh scale

[Ellawells]

Hi , just wondering if anyone can shed some light for me about my marsh scale, I had my lab report back and it was positive, I spoke to my doctors but he didn’t know what my level was...... I really want to know so I know where I’m at for healing etc, would it be on my lab report or will my dietitian know. 
It says “ large areas of total flattening of villi and widespread marked villous atrophy, also all the other bits were increased, lymphocytes and mitoses. 
not sure if I do need to know but as I had no symptoms apart from anemia I’m guessing I should be hyper careful with cross contamination from now on.

thanks for reading this 😊

[yuluyouyue]

1 hour ago, Ellawells said:

Hi , just wondering if anyone can shed some light for me about my marsh scale, I had my lab report back and it was positive, I spoke to my doctors but he didn’t know what my level was...... I really want to know so I know where I’m at for healing etc, would it be on my lab report or will my dietitian know. 
It says “ large areas of total flattening of villi and widespread marked villous atrophy, also all the other bits were increased, lymphocytes and mitoses. 
not sure if I do need to know but as I had no symptoms apart from anemia I’m guessing I should be hyper careful with cross contamination from now on.

thanks for reading this 😊

I think this is Marsh 3c, as I got  pretty similar description and it said Marsh 3c. I also only had anemia, no other sympotms, but I think I had celiac for many years. Don't let the 3c discourage you. My antibodies normalised within a year, my iron also. I will have another endoscopy some time in the near future, but I think my villi are recovering. As for my carefullness level, my home is gluten free, but I do eat some processed food that either says gluten free or that shouldn't contain gluten when looking at the ingredients. So I am not on a 100% whole foods diet in order to eliminate every possibility of cross contamination, but I do eat a lot of whole foods. I also eat at gluten free restaurants and drink coffee daily in cafes. And I haven't ditched anything except gluten. Hope this helps. 

[Ellawells]

Wow, that’s so interesting, thanks for your reply, without doubt I’ve had it for years, it only got picked up by one very keen doctor this year, I know I wasn’t presenting classic symptoms but one doctor told me to take 12 iron tablets a day, surely he should of thought there’s an absorption problem, I’m a bit salty about it to be honest but very thankful for that doctor in March.

I have cut gluten out but like you I’m not on the whole food bit, a dietitian will be in touch with me and I’m hoping now it’s been found I’ll be under the celiac umbrella and hopefully be on my way to better health.

 

[yuluyouyue]

35 minutes ago, Ellawells said:

Wow, that’s so interesting, thanks for your reply, without doubt I’ve had it for years, it only got picked up by one very keen doctor this year, I know I wasn’t presenting classic symptoms but one doctor told me to take 12 iron tablets a day, surely he should of thought there’s an absorption problem, I’m a bit salty about it to be honest but very thankful for that doctor in March.

I have cut gluten out but like you I’m not on the whole food bit, a dietitian will be in touch with me and I’m hoping now it’s been found I’ll be under the celiac umbrella and hopefully be on my way to better health.

 

I can totally relate. I was around 20 when my blood test showed anemia for the first time. Every time doctors would tell me to eat more meat or take supplements for a month. Granted, I didn't visit doctors often in my 20ies, more like every few years for a general blood test so I never went back to retest after a recommended course of iron supplements. I also Iived abroad for a long time. It was only in my late thirties that I tested my blood more often and it was then that my GP saw that there was no improvement even after iron pills. She referred me to a gastro (as my gynecological checks never showed any abnormalities), he ordered an endoscopy for the next day, and I was diagnosed within a week. It was a big shock for me and it took me around half a year to stop fretting about the diagnosis. But seing my antibodies go down and iron up made me feel more relaxed and not so afraid of food anymore:). In the beginning I was wondering whether drinking from a glass at a cafe would cross contaminate me :), but now I don't worry about such things. It is very important to relax, do what you can and not think about what ifs. It will be fine.

[Ellawells]

Wow that’s exactly what was said to me, like you I was carrying on with my life. As long as I could keep my 20k steps up a day I figured it was just the way I was.

just one more question if that’s ok, did you have a bone scan and was it ok, doctor immediately put me on calcium and vitamin d, 4 a day, not quite sure how I’ll be absorbing that or is it a different process with tablets, clearly I haven’t got a clue about all of this 😊

[yuluyouyue]

30 minutes ago, Ellawells said:

Wow that’s exactly what was said to me, like you I was carrying on with my life. As long as I could keep my 20k steps up a day I figured it was just the way I was.

just one more question if that’s ok, did you have a bone scan and was it ok, doctor immediately put me on calcium and vitamin d, 4 a day, not quite sure how I’ll be absorbing that or is it a different process with tablets, clearly I haven’t got a clue about all of this 😊

Yes I had it, it revealed osteopoenia. I am 41. Another shock! But I read when the cause is celiac, and only then, it can be reversed. My doctor prescribed some calcium citrate for a month or so, not much longer as I still consume quite a lot of dairy. I also take d3 oil (only on days when I get zero sunshine and in the summer not an all). At diagnosis my D was on the lower border, as was folic acid. Except for iron, everything else was in range. I also took, on my own intiative, b complex for a while. I will retest my vitamins soon and if all is mid to upper range, I don't plan to take anything anymore except for d perhaps and a multi. I hope my villi will start absorbing everything that from food. 

[yuluyouyue]

41 minutes ago, Ellawells said:

Wow that’s exactly what was said to me, like you I was carrying on with my life. As long as I could keep my 20k steps up a day I figured it was just the way I was.

just one more question if that’s ok, did you have a bone scan and was it ok, doctor immediately put me on calcium and vitamin d, 4 a day, not quite sure how I’ll be absorbing that or is it a different process with tablets, clearly I haven’t got a clue about all of this 😊

Oh yes, I am not sure how much sense it makes to have all these supplements in tablet form at the beginning of healing, ie. when the villi is not absorbing. But I did take iron (forgot to mention) for a month and what I already mentioned. 

[Ellawells]

That’s heartening that it can be reversed, I’m guessing I’ll probably have it to be honest. 
once I see my dietitian I’ll take and do anything I have to, I want to have my yearly endoscopy and hopefully see some improvement. 
thank you for your input, sounds like we could be celiac twins 😊 

[yuluyouyue]

1 minute ago, Ellawells said:

That’s heartening that it can be reversed, I’m guessing I’ll probably have it to be honest. 
once I see my dietitian I’ll take and do anything I have to, I want to have my yearly endoscopy and hopefully see some improvement. 
thank you for your input, sounds like we could be celiac twins 😊 

Don't mention it! Actually, where I am from we are not assigned a dietitian. I read up on post diagnosis tests on my own and asked my GP for referrals for a bone scan, ttg iga, thyroid, and vitamins :). She is great and she obliged to all. Also, she set me up for regular checkups with a gastro, but I don't see much point going, as in my 2 visits so far, and seeing that I don't have any GI symptoms, she just ordered retesting of vitamins (which my GP can do too). 

This is the info I found useful and which I went to my GP with immediately after my diagnosis :).

https://celiac.org/about-celiac-disease/treatment-and-follow-up/

[AlwaysLearning]

Iron anemia was also the first official symptom I tested positive for ... when I was 16 and tried to donate blood. But I don't think anyone tested me for vitamin deficiencies for at least another 20 years, until I was in my 30s and I asked for the panel because I had so much difficulty gaining weight. I frequently got caught in the predicament of doctors automatically presuming I was healthy simply because I was young. So do not beat yourself up for skipping a few yearly checkups. It is highly likely they wouldn't have found anything because they would not have been looking for anything.

But I wouldn't be too quick to think you weren't exhibiting other symptoms all along. There are all sorts of things I was experiencing that magically disappeared when I went gluten-free. The ones I appreciated the most were having improved sleep and no more insomnia. And I used to have super cold hands and feet all of the time, but that went away too. The least-expected was to have my hearing improve on a gluten-free diet. I hadn't even realized that I had hearing loss until it came back again.

Anyway, I mention these because remembering these sorts of improvements makes it easier for me not to feel depressed about all of the things in which I can no longer participate, and yes, the better you are about being gluten free, the more of these there are.

Because you talk about being careful about your gluten-free diet and avoiding taking risks, I hope you can identify some of these sorts of improvements to remember when you're feeling deprived. Also, yuluyouyue's advice about seeking out other tests to make sure systems are on track is really smart. 

Of course, I hope that you are one of the lucky ones and got a diagnosis before anything else went awry. Good luck on your gluten-free journey! I'm sure you're going to be great at it and won't beat yourself up too badly when you have the inevitable slip ups.

 

[Ellawells]

Thank you for the brilliant information, I’m in the uk so very lucky that I’ll now be under the umbrella for this now. I know covid has taken its toll on our nhs but so far so good, I’m just waiting for my appointments to come through which is frustrating as I have zero patience. 
I’m definitely going to be aware of any symptoms that might clear up, I’m not sure I have any but like you said I probably have got some without knowing 

This site is amazing and I’m extremely grateful for all the advice and support I’ve had right from the very beginning.