How To Recover Without Help

[ben-uk]

I have recently been diagnosed as coeliac. I've had mild symptoms for years but they kind of crept up on me. During the new year though things got really bad and I had to see a doctor. It took several trips before I was given a blood test "just to rule things out". The previous doctors were happy to just label it as IBS. The blood test came back positive but only very slightly but thankfully the GP still decided to send me for a biopsy. This definately came back positive and I was told to start the gluten free diet.

 

I'd actually already started the diet after the biopsy so I've been gluten free since 1st February. That makes it 7.5 weeks now. Since diagnosis though I've basically been left to it. I've been referred to the GI clinic but they're so overloaded that my appointment isn't until 22nd May. That will be nearly 16 weeks since attempting to go gluten free. In the mean time I'm left wondering if I'm doing the right things!

 

I would say that my health has improved a bit in this time. I'm not needing time of work anymore but I'm still feeling ill. I have a few days of feeling "ok" followed by a few days feeling ill. I keep getting painful stomach cramps, head aches, pain in the kidney area, diarrhea and a kind of burning sensation across my whole abdomen.

 

I've been able to get some tips about the diet from people I know who are also coeliac. I'm fairly sure I'm eating the right things, at least most of the time. I've also replaced my frying pans and wooden spoons. I don't know if I'm feeling ill because I've eaten gluten or if it's just the healing process. I've been online to read about it but there's so much conflicting information it's hard to know what to believe.

 

I don't reccomend googling "coeliac recovery" as one of the first pages told me that I'm dieing a slow death, that I won't heal and that I'm bound to get cancer. Really? Sadly i have to wait till June nearly before I can ask the specialist.

 

At the same time I had a terrible ear infection that ruptured my ear drum. This got better but it hasn't gone away completely and my ears keep getting worse for a few days and then better again. I'm starting to wonder if it's related to gluten or some other allergy. Maybe it's just terrible timing.

 

So anyone got any tips for going it alone? Does this sound like a "normal" recovery?

Thanks

[notme]

I've been able to get some tips about the diet from people I know who are also coeliac. I'm fairly sure I'm eating the right things, at least most of the time. I've also replaced my frying pans and wooden spoons. I don't know if I'm feeling ill because I've eaten gluten or if it's just the healing process. I've been online to read about it but there's so much conflicting information it's hard to know what to believe.

 

I don't reccomend googling "coeliac recovery" as one of the first pages told me that I'm dieing a slow death, that I won't heal and that I'm bound to get cancer. Really? Sadly i have to wait till June nearly before I can ask the specialist.

 

go to the coping section of this forum and read the newbie 101 thread.  probably more practical info on there than you will get from the healthcare pros.  i don't know about the UK but my doc said "congratulations you have celiac.  don't eat gluten.  good luck"  so, most of us have had to figure it out on our own.

 

pshaw.   i hardly even catch a cold anymore, so cancer can kiss my shiny white hiney lolz.  your immune system will rebound.  if you leave it untreated, you have a good chance of hastening cancer............ and other nasty stuff.

 

check that newbie thread.  welcome to the forum, and good luck!

[KCG91]

That sounds familiar! Well done for having the patience to get a biopsy, I didn't even have the patience with the NHS to do that... My diagnosis is based on two very positive blood tests followed by a much lower one after three months gluten-free. That and my improved health is all the proof my GP and I need. 

 

One thing that you can check with your GP before the GI appt is for any other deficiencies (eg. B12, anaemia etc) which can happen with coeliac.

This forum is great and you will get a lot of help with adjusting to the diet. There's a UK specific board Open Original Shared Link which is good for things like UK food labelling and NHS-related stuff. 

It sounds like you're getting things right with the kitchen equipment and diet but as notme says, check out the Newbie 101 thread. It seems to take everyone a different time period to start feeling 'good', but if you're feeling 'better' that's going in the right direction! It is a lot to take in so don't be too hard on yourself if it takes a while to get your head around. Good luck, things will get better!

[cristiana]

Hi Ben 

 

If you register and join Coeliac UK online they will send you some bumph including a food and drink directory which is very helpful (that is also available online). 

 

www.coeliac.org.uk

 

I am in my mid-forties and was told by my consultant that I would feel like a twenty-five year old again once I was on the gluten-free diet.  Well... a year on, I am still waiting!  I think this is the experience of a lot of Coeliacs - it can take time, esp. if there has been a lot of damage.   

 

You may want to experiment taking milk and soft cheeses out of your diet to see if that helps with your ongoing symptoms.  Once the villi start to heal (it might take a few months) you should be able to tolerate it again.  I could tolerate moderate amounts of hard cheese, like Cheddar, but a glass of milk or a portion soft cheese upset my stomach almost instantly when I was first diagnosed.

 

Coeliacs are often advised to avoid oats initially, say maybe for six months, to allow the stomach to heal and then to try to introduce pure oats (for example Nairns) to the diet.  Remembering that regular oatmeal is easily cross-contaminated so no more Quaker Oats for us  .   Once pure oats are reintroduced you can decide for yourself if they are affecting you (a small percentage of coeliacs cannot tolerate oats at all).

 

I still get stomach pain with oats but my nutritionalist thinks that as I also get it with lentils it might just be the type of fibre that is upsetting at the moment, and maybe in time when the villi are completely healed I will be able to put both back on the menu.

 

Lastly, one thing I find hurts my stomach is soya.  Unfortunately a lot of UK gluten-free manufacturers substitute wheat with soya in things like biscuits.  I wish they wouldn't because a lot of people can't tolerate it.  This may not be the case with you but it might be worth bearing in mind.

 

I hope some of this is of use.

[nvsmom]

Your recovery sounds pretty normal, it can be a long slow process. Some people feel better in weeks but there are others who need months or ears to gt back to good health. I experienced those ups and downs too but after nine month gluten-free It was mostly the ups. Keep giving it time.

In the meantime, it is good to check nutrient levels. Celiacs are often low in B12, D, zinc, A, K, Fe, ferritin, folate, Mg, Cu and zinc. Hypothyroidism is common too, and can really wear you down. The tests for that would be TSH, free T3 and free T4, and TPO Ab.

I hope you feel well soon.

[ben-uk]

Thanks everyone for the replies. It helps to hear people who've gone through this already being positive. My hospital appointment has just been cancelled so who knows, maybe they'll bring it forward!

 

I think my GP checked some levels. When they did the blood test they also tested for Crohns and a few other nasties. I have no idea what this entails but when he sat me down for the diagnosis I asked about anemia and he said that result came back ok in the Crohns test. The only slight anomally was the gluten level. I think he said normal levels were below 4 and mine was 4.3 (whatever it was they were measuring). Everything else in the blood test he said was normal but I don't know exactly what levels they checked. He's a good doc though so I trust him.

 

I registered with coeliac UK and I have the food and drink directory. I find it difficult trusting food labels though when they put vague statements like "flavourings". I bought some chocolate recently and I spent ages picking out a bar that didn't have a gluten warning on the back. I eventually settled on Lindt because the ingrediants looked ok and there were no warnings. Got home and googled it (just to be extra sure) and there was a warning on their website saying not suitable for coeliacs! So now I feel like I have to thoroughly research everything I eat or drink.

 

I'll have a look through that newbie thread and see what's there. Thanks.

[tspiggy]

Hi, Ben --

 

Welcome to the boards.  I was a regular here when I was initially diagnosed 18 months ago.  I was sick, exhausted, scared and completely overwhelmed by the amount of conflicting information I found online.  The G.I. who diagnosed me knew next to nothing about celiac.  The biopsies he took during the endoscopy he ordered looking for gastritis positively diagnosed me.  He called it a gluten allergy with no cure and the only treatment was a gluten-free diet for life.  But he said I could occasionally lapse from the diet with no harm.  Then he sent me on my way with a handful of pages about what I could and couldn't eat.  It took less than five minutes of Googling when I got home to learn that celiac is an autoimmune disease, not an allergy, and that it's NOT ok to lapse from the diet without causing additional harm.

 

I made a lot of phone calls to manufacturers in those early days as I learned how to navigate food labels.  With the help of my wonderful nutritionist whose brother is also celiac, I also learned not to fear eating out.  I posted questions here and received the most wonderful advice from a member named Irish Heart:  don't let your disease define you; don't let it confine you, either.  You are not your disease, and you'll slowly learn what does and doesn't work for you.

 

Just like every celiac presents different symptoms (I never had diarrhea...exhaustion and raging anxiety were my most prominent symptoms), every celiac also recovers at a different pace.  It took me two months to start feeling better once I went strictly gluten-free, six months to have more good days than bad, and nine months to feel healthy and practice yoga again after being too exhausted for nearly two years.  Within months I gained back the 11 lbs. I lost (and then some after discovering gluten-free cupcakes).  My most recent blood work last November showed my monocyte levels were normal so clearly I'm doing something right.

 

As for the conflicting information online, one of my friends once remarked about looking up health information that Google has you dead within three months regardless of your condition.  There's a wealth of valuable information out there; there's also a lot of crap.  I found the "most celiacs are slowly dying" link at the top of a search as well and naturally clicked on it.  The authors of that article aren't completely wrong; it takes more than simply a gluten-free diet to heal the small intestine.  Celiacs also need supplements like probiotics to restore good intestinal flora and a diet rich in anti-inflammatory and healing foods.  My nutritionist told me the same thing.  But hey, what a coincidence...the authors of that "celiacs are slowly dying" article just happen to be selling a book about that diet as well as the supplements they recommend.  They're trying to generate traffic to their website to sell something, and what better way than to grab a newly-diagnosed celiac's attention than to tell them they're slowly dying?  My advice regarding researching information online is to write all your questions down to ask your doctor, and if you can't wait that long then stick to reputable sites like this one and Mayo Clinic.  Even WebMD tends to be a fear monger.  Also a good nutritionist is a valuable ally.

 

Once you settle into your new lifestyle and begin to feel well it will all become second-nature.  Try to develop an upbeat attitude about your condition.  If nothing else, remission only requires a dietary adjustment...no relying on meds that may or may not work.

 

Good luck and hope you feel better soon.

[124chicksinger]

Hi.  What I can add, what will be echoed by many, is in the beginning it is a good idea to stick with unprocessed foods and eat clean.  It is much easier to eliminate all grain products and choose meats, veg, fruits, and safe dairy.  Some will advise to lose the dairy as well, but that is an individual choice.  These give your body time to heal and leave you without guessing what contains the hidden gluten.  As your healing progresses, and you want to add things to your diet, continue your internet and grocery store research on what foods contain gluten, what are the "tastiest" gluten-free pastas and pancake mixes.  If you had given up cereal, venture back into those that have always been gluten free (the rice varieties) but of course continue reading every box, unless it is labeled across the front "gluten free."  Google some recipes and go for the easier ones to begin with.

 

Your ear likely has nothing to do with gluten.  Coincidence. 

 

Continued success to you.  You can do it; you'll continue adding tools to your knowledge on how to live gluten free.