Newly Diagnosed

[emma]

I was diagnosed about 3 weeks ago totally unexpectedly. I went in for my annual physical with a new doctor in January, and had some routine blood tests.To my shock, we found that I was seriously anemic as well as vitamin D deficent, and a DEXA scan showed me to be osteoporotic in some locations(I'm 51). As a result I was referred for a colonoscopy to check for internal bleeding or cancer. Nothing was found, thank goodness, but luckily the Gastroenterologist investigated further- I had an upper endoscopy and an intestinal biopsy, which confirmed Celiac disease. I had been a little tired but never really had any gastrointestinal symptoms - at least nothing that would have prompted me to see a doctor .

I wonder now if the depression I've suffered with most of my adult life could be related. I have also always been pale and thin, and have always had dark circles around my eyes. Celiac symptoms? I don't know.

At first I felt that the gluten free diet was giving me more energy, but today I am very down. In addition to a gluten-free diet (which I have pretty much figured out on my own from this website and many others),my doctor prescribed an iron supplement, and suggested an OTC calcium plus d supplement. Other than that, not much other advice. I feel a bit lost.

Any additional supplements I should be taking or trying? I do seem to be constipated, maybe due to the iron and calcium. I;ve been drinking tons of water and eating tons of prunes, and that hasn't helped AT ALL.

I'm wondering too, how I will know if I'm unintentionally ingesting gluten since I don't have any definitive reaction when I do? I'm also wondering how long it will take for my intestine to heal (and how will iron and calcium supplements help in the meantime if I'm not absorbing anything?) My doctor said nothing about followup - when should I plan to go back to see if the supplements are working, and to see if my villi are coming back?

I'm a little scared, not knowing how long I've had this and how much damage has been done. I hope that a gluten-free diet works, but what if it doesn't?

Sorry for babbling on so long, but I feel a little better having done so. Any help or suggestions would be more than welcome.

[KaitiUSA]

Welcome to the board! Going gluten free will work. Don't expect to get better overnight though unfortunately. It takes time for your body to heal. It took me 3 months to get to 85% and then another few months to get to normal again. Your symptoms are some of what can come with celiac. There are 200+ symptoms that can come with celiac and some people don't even get symptoms. What you are saying you have: Pale,thin,constipated,anemic,osteoporosis,depression...all can some with celiac

https://www.celiac.com/st_main.html?p_catid=12

This may help you...it is a guideline for safe and forbidden foods for celiacs. It will help you be aware because gluten can be hidden under things such as modified food starch. Once your body gets off of gluten for a while you will notice when you ever have anything with gluten. I was not sensitive at first but now I am very much sensitive to the smallest amount. You should also make sure your toothpaste is gluten free as well as makeup such as lipstick that would definately get into your digestive tract. Some people like me use gluten free shampoos, lotions but others don't mind using gluten containing products..it's a personal choice.

Companies like Kraft and General Mills will not hide gluten under any of their products so unless you see wheat,rye,barley,or oats on the label then it is safe. There are quite a few brands that have that policy here in the US. Once you find out all the brands and ingredients to question then you will find it to be so much easier.

As far as supplements go ....make sure they are all gluten free...I use so many supplements but here is what I strongly recommend.

Probiotics, enzymes, and liquid vitamins. I consider these essential. Liquid vitamins are absorbed by your body more efficiently and I highly recommend them. Probiotics help your immune system and help fight the bad bacteria and are also very essential. Enzymes help with good digestion.

If you have any questions just ask and good luck with everything

[mela14]

Hi Kait,

i was just reading your response here. I think I have to get on a good probiotic. One that won't upset me. I was on one that got me so sick ....later I find out that it had some gluten in the capsule...........

Hang in there Emma, it seems that you are onthe right track I haven't had a biopsy yet and not sure how conclusive it would be as it was not done immediately. I 've been attempting gluten-free for the past 4 months....of course I had some major unintentional slip ups that set me back. I new I had gluten because it was immediately after eating a store cooked chicken. I felt soooooooo ill within a half hour. It lasted for days! I was moaning and rocking in bed like I had been poisoned. Each one of us is different but...that's how I get when I ingest a large amount. Then, it take days to get a little better.

did you have any blood test done? How did they come back? What made them suspect celiac to test for it? just curious. I've been going around for years...........I never got a dr that was on target................good for you! How long were you sick before they did the biopsy?

Take good care of yourself. let us know how you are.

[emma]

Thank you so much for your responses. The info is very helpful - I will look for the supplements you suggested, Kaiti - and it's good to know I'm not alone.

Mel, to answer your question, I just consider myself very lucky to have been referred to an astute gastroenerologist. When my GP ( who I like very much, but who is kind of clueless about Celiac) saw that my routine blood test showed an iron deficiciency, she referred me for a colonoscopy to rule out cancer. My understanding is that when a post-menopausal woman or a man is iron deficient, the most likely cause is colon cancer or some other bleeding in the GI tract, so a colonoscopy is routinely the next step.

I don't really know why the gastroenterologist suspected Celiac - I suppose the iron problem was a clue-, but I do recall him asking me a couple questions during the colonoscopy about my ancestry (I'm Irish-Scottish), which struck me as odd at the time (now makes sense). He scheduled me for an upper GI endoscopy (which I don't think my GP would have done) and when he looked at my small intestine, he felt reasonably sure that Celiac was the problem - apparently my intestine had a tell-tale "mosaic" appearance. The biopsy confirmed it - my villi are flat.

I have no idea how long I've been sick. Apparently long enough to become anemic and osteoporotic, which doesn't happen overnight! I never really felt sick, but now I'm wondering if I just got used to feeling tired and depressed, and accepted it as normal. I'm hoping to be a new person on a gluten-free diet! I'm just thankful that I've got something that's manageable, and that I don't have to be on medication for the rest of my life.

Thanks again and best wishes to you both- Emma

[Donna F]

I don't know if you are aware of this or not, but to avoid contamination, you will need to use a seperate toaster than others, and don't share condiments that may have crumbs in it, like butter, peanute butter, etc. Get seperate jars if you need to, and label them "gluten-free". I use gluten-free lotion and all make up too, b/c I know there's a possibility of forgetting I have lotion on and then eating a finger-food. Also, with makeup, I have a tendency to touch my face, and this will get it into my hands, and eventually my mouth. I need gluten-free shampoo b/c my skin peels if I don't, but even if yours doesn't, you may want to switch just b/c of the possibility of gietting some in the mouth while washing it, or, if you have long hair, it can get in your eyes or mouth. I prepare my food on a seperate counter from everyone else's, and wash my hands after preparing theirs.

That's all I can think of right now. I'll ditto the liquid vitaminns. I also take a b-complex and some antioxidants (OPCs and ORACs) for more energy. Can't find them in a store though. I get my OPC online and ORAC from a friend who sells it) - what an amazing difference this has made in my energy levels! Oh, and, before I became pregnant, I was drinking aloe too. This helped with my constipation and can heal the intestines more quickly too. I recovered quickly from my syptoms, but I know it can take others more time, several months sometimes. I didn't have gastrointestinal symptoms either until I had been on the diet for a few months, then, there was no mistaking it! You get more sensitive with time on the gluten-free diet.

Good luck to you. I hope your recovery speeds up!

-donna

[ianm]

You've come to the right place. It took me a year before I could say I was healthy. I spent 36 years of feeling sick everyday. It has taken a lifetime for celiac disease to tear your body up so it won't improve overnight. I take liquid minerals and find that really helps. When I get hit with gluten my lips start to have a tingling/prickly sensation. I then start to feel a little tired and my brain fogs up a little bit. This reaction starts about two minutes after ingesting gluten. Once this happens I can stop eating and avoid ingesting anymore contaminated food and have to suffer any real serious reactions. You will get nailed with gluten from time to time no matter how careful you are. As your body heals it gets a little easier to deal with. I've learned a lot from this website in the short time I've been using it.

Ianm

[kabowman]

I take multi vitamins but I have problems with B vitamins - when I drop down below 2,500% of the recommended daily dose to 1,500%, I need naps in the evening, I don't have the energy to get any work done during the day, etc. and if I ignore those warning signs, I develop sores on my tongue and in my mouth...when I remember to take an extra 1,000% pill (gluten-free of course) in the evening, I start to feel better. I don't seem to need it all the time but a lot of the time which is why I sometimes go through the naps phase.

Good luck and take time - it was months before I even realized that my joint pain was gone...

-Kate

[luvs2eat]

Can anyone recommend liquid vitamins? I can only think of liquid children's vits.

It took me a whole year before I felt like my symptoms (diarrhea, bloating) were gone and I felt back to normal. I never got the "unexplained weight loss" (darn) and have put ON weight since goign gluten-free.

My doc said to me that Celiac disease was common in those of Irish descent... I'm with you Emma... my mom was right off the boat (Belfast) and my dad's fam is all Scottish.

Good luck, keep the faith... and come back here. Everyone is so knowledgable and helpful!

[KaitiUSA]

I highly recommend liquid vitamins. I use ones from Utrition and they say ultra absorbable on the front and they are called Liquid Vitamins Plus. Very good thing for us. There are also other supplements I highly recommend and liquid vitamins are definately a good thing

[Donna F]

I buy mine from a friend who works for Market America. I take a mutivitamin, calcium, antioxidant blend (basically VitC&E) and the OPC and Orac. They are isotonic: a powder you mix with water that is the same PH as your body's natural fluids. After minutes of drinking it, once it enters the stomach, it immediatately opens the pyloric valve and is absorbed 95-99% (?) within 15 minutes (so they say). I used to work for this company too, and I admit, the stuff is pricey, but I haven't felt this good in my whole life - even before I ever had any celiac symptoms! Oh yeah, I take all those things in one glass, first thing in the morning, then I eat, and then I take a b-complex (also isotonic)and a magnesium pill as I hear it is best absorbed if taken with or after a meal. You can get aloe juice just about any health food store, but I prefer the Market America one with strawberry kiwi flavor(when I can afford it!). All those things I mentioned are gluten-free (obviously). I cringe when I look at how much money I spend on all this, but it has been so worthwhile. I am going to look into those liquid vits Kaiti recommended - maybe it'll save me a few bucks! Oh, speaking of, I get my OPC from www.opc.cc now. It's way cheaper and is actually stronger than the Market Am. brand (doesn't taste as good though)

-donna

[emma]

Thanks for all the info, everyone. This is a great board!

-Emma

[Merika]

great advice from everyone, but 2 things leap to mind...

1- aloe juice can cause diahrea if you're not constipated

2- there are some prolific, very knowledgable and eloquent folks on this board (Kaiti are you one? )who also happen to be teenagers, and when they mention "time to heal" from gluten, it often sounds very quick to me. Teenagers (and even more so little kids) heal very fast compared to the rest of us, in everything, so take a few grains of salt with everyone's answers on this question.

According to a well-respected celiac researcher (who happened to diagnose me) the "standard adult" (medically speaking) will take about a year for villi to heal, and for those who are older (ie, 50 or 60) villi can take 2-3 years to fully heal. Add to this times for the rest of your body to heal, once you are absorbing your food properly, and I think being patient and not expecting overnight results would be practical.

Mind you, I felt immensely better 48 hours after going gluten-free, and continued to feel great for several months, but for the last 9 months or so my health has been cycling up and down - overall improved, but hardly just getting better and better. It's the old 2 steps forward and 1 step back.

Best wishes, and check out your doctor prescribed supplements to make sure they are really gluten-free (call the company).

Merika

[mela14]

Merika,

you are so right.......being older and having this disease longer takes more time for healing. I am having a rough time healing and also have other food intolerances so I can't seem to get a good day in there...........add to that Candida flaring up because of all the natural fruits I have been adding to my diet. I't snot easy.

Who is the respected celiac dr that you saw?

I called Columbia Presbyterian today to make an appt and of course Dr. Peter Green does not take ins. They suggested I see another dr there but have to call tomorrow for an appt.

I'm hoping they are more on board that the regular GI's I have seen. I also need a good nutrionist to help me with my diet. coincidentally I got some blood test results today...and didn't evn know my dr was checking for food intoerlances. Boy there are so many! I also had the York testing done and a lot showed up! I didn't need the tests to tell me that I was reacting to foods........ut it made it more real when seeing it on the blood test. So....what I am saying is that from being sick for so long and being undiagnosed....other intolerance have become problematic and my gut is so raw and sensitive. I'm sure it will take a long time to heal. Even being gluten-free for 4 months...my blood results still showed a high Gliadin AB IGG...hmmmmmmmm.... Not nearly as high as before going gluten-free...but still high.

Time is an important factor...but what you do with that time makes all the difference in the world. For me...I have to scrutinize things a lot better. I'm still learning.

take care,

[granny]

and for those who are older (ie, 50 or 60) villi can take 2-3 years to fully heal. Add to this times for the rest of your body to heal, once you are absorbing your food properly, and I think being patient and not expecting overnight results would be practical.

Thanks for mentioning this. I'm 59 and have been sort-of kicking myself for not healing quicker and figured I must be doing something wrong. I try so hard to be gluten-free but sometimes it feels like a loosing battle. I was dianosed in Nov. 2003 and still have lots of problems. I am an active person altho I often have to kick myself into gear because I'm so tired but like you said, I also have other medical problems that slow down my progress. I try to not stress about it but it's like always in the back of my mind, what did I do this time? Thanks again, Granny