Refractory Coeliac Disease

[nikki-uk]

Hi all!New too this board so bear with me.

My husband was diagnosed 9months ago.Been gluten-free 7 months.Hubbie was also diagnosed with rheumatiod arthritis 3 years ago.Stomach troubles seem to start with him taking nsaids and sulphasalazine for the arthritis.Ended up in hospital for a month for massive weight loss.Bloods were negative(borderline apparently) for coeliac disease but biopsy showed'some villous atrophy'.Since commencing the diet he seems to be worse if anything with a stunning array of symptoms!It's like he's got chronic fatigue syndrome & is house bound & some days bedridden.

The bowel symptoms come & go-but more worryingly are the other symptoms.He has great difficulty swallowing (for last 9 months).There is no infection there.He has little or no appetite and feels 'foggy headed' all the time.Has great difficulty standing from sitting(dizzy spells)and weak muscles.Shuffles with unsteady gait.Doesn't have the strength to turn taps,unscrew caps etc.Needs electric bath chair to get in & out of bath.It's not the arthritis thats doing this.

He also has pain & tingling in the soles of his feet,& his feet are constantly swollen,sometimes going a funny purple colour!

He now weighs 7st7pounds,cannot put weight on,despite rigidly sticking to diet.Had second biopsy done recently(waiting for results) but gastro doc thought his duodenum looked like untreated coeliac disease.Next appt in 3 months,docs have mentioned steriod treatment.Any thoughts and ideas would be greatly appreciated>Sorry it's so long!!

[KaitiUSA]

The refractory celiac disease is EXTREMELY rare. What first comes to my mind is he 100% gluten free? You know everything gluten can be hidden under correct? Also have you checked his toothpastes, soaps, shampoos, any medications etc. Make sure there is absolutely no chance of any gluten getting into him. It really sounds to me like something may be slipping in somehow.

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

Take a look at this link it provides safe and forbidden list along with other things to check to make sure of a 100% gluten free diet.

When there is a lot of damage it also may take longer to get better for some people to get better.

You may also want to look into other things that can come from celiac. Has he had his thyroid checked, been checked for diabetes, etc.

I would also consider an IV to get nutrition(vitamins and minerals) to his bloodstream. I also would recommend liquid vitamins, enzymes, and probiotics if he is not on them already. I highly recommend these things.

I hope he feels better and you guys will be in my prayers. If I can help at all let me know

[Canadian Karen]

Have you considered the possibility of MS? (Multiple Sclerosis). MS and celiac disease are linked by some gene.

Reading your post, it amazed me how many symptoms you described that falls into the MS category. I have recently just finished researching this as my dr. is sending me to a rheumatologist for continued joint stiffness/pain, and I thought I should be going to a neurologist instead because I suspected MS.....

Google it and read some of the symptoms.

Here are some links from my research:

www.ms.about.com/cs/firststeps/a/Diagnose_p.htm

www.mayoclinic.com

www.powerhealth.net/articles4.htm

www.merck.com/mmhe/sec06/ch092/ch092b.html

www.mswatch.ca

Good Luck! I hope he feels better soon.....

Karen

[debmidge]

Nikki

What is your husband's weight in translation in American (I don't recall equivalent stones to pounds) and what is his height? His symptoms sounds like my husband's but without arthritis....I too don't know what else to do for him...my husband has been sick since 1977 but diagnosed with celiac disease in 2003 (went all those years misdiagnosed). My husband is too sick to keep a job - he's barely able to get by day to day activities.

[nikki-uk]

Thanks all for your replies,

Just to clarify,my husband is definately gluten-free.I check everything to the point of obsession,& am well aware of risks involving cross contamination.(He has not eaten out since dx of celiac disease).

It has been suggested to me that maybe my hubbie has had celiac disease undiagnosed since childhood.(He is now 40yrs).He's always been skinny,underweight,and avoided food if he could!His weight converts to around 120pounds at 6feet tall.He is currently taking food supplements although you may not be familiar with them as I'm in uk.He has 'scandishake mix'-a milkshake which is high cal,high energy drink.Also has'calogen'.

He is persistently anaemic despite taking folic acid and ferrous sulphate.Also has a hiatus hernia and takes 'lanzoprole' for over acidity.

Today it is now 6.30pm and he still hasn't got the strength to get out of bed.(He often suffers from bedsores).When like this he can only manage fluids.

I suppose I'm scared the docs have missed something-to still be this ill after 7 months gluten-free.To make matters worse his arthritis is currently in a 'flare up',but he is unable to tolerate any meds for it anymore(i.e nsaids).

He is currently waiting to see a neurologist-(possible gluten ataxia)but this may take up to a year!(I know the health system here is different to U.S).

I'm assuming docs will put him on steroids at next appt if his weight doesn't improve.Has any one else had experience with steroids?I know that they have alot of side effects.

It's a very frustrating situation,waiting for months at a time for appts-when I don't feel he can wait any longer.We also have 3 kids, so it's hard on all of us.I'm just fed up,& want some answers from the docs.I'm not totally confident they know what do next!!

Please excuse my long rants!Thanks for the links to sites about M.S.He does seem to have some of the symptoms.-Nikki

[KaitiUSA]

I would definately look into other possibilites besides celiac disease....seems very odd to be so sick and continuing to get worse.Has there been any progress at all? I hope you get some answers soon and keep us updated and if you have any questions don't hesitate to ask

[tarnalberry]

It is also possible, but rare, for atrophy to occur due to dairy. You might consider taking that out of the diet as well. But I agree that there may well be other complicating factors not relating to celiac.

[ryebaby0]

Steroids are sometimes part of treatment for celiacs who are having difficulty recovering. Yes, there are side effects from long-term use, but at this point they are reasonable compared to what you have to gain, IMHO. My son was on very high doses of prednisone, and now is on an immunesuppressant called Prograf. Ask your doctor if he has ever heard of autoimmune enteropathy -- a very rare disease, but it's possible that's what is wrong with your husband. (My son is one of about 20 kids in the whole US w/ AE) It causes "intractable" diarrhea and weight loss, and can trigger many other immune malfunctions (Your DH feet sound like Reynaud's syndrome) My son was dx w/ rheumatoid but it turned out to be a false alarm; as he recovered/healed, the RA symptoms resolved themselves and have not returned. He also had been put on NSAIDS before the celiac dx and they made him profoundly ill and trigger a cascade of problems. The prednisone helped, but until they caught the AE and treated it, he was in a downhill skid.

The Mayo Clinic has many doctors who will --shockingly enough -- "talk" to you over the 'net about AE. You might want to get someone there in touch with your husband's doctor. Good luck, and safe journey

[judy05]

My problems didn't start to get better until I gave up on dairy, I winced when you

said he was taking milkshakes. Dairy causes me to be foggy-minded, "bubbly" intestines, and arthritis-type pains, etc. You could try giving up dairy for a few days

and drinking gluten-free teas which are very easy on an irritated digestive system. I hope you find answers and let us know how he is doing.

[nikki-uk]

If you devlope a lactose intolerance after going gluten-free-surely you would have diarrhea?

I know my husband should try to cut the milk ,but what about other dairy products?It's hard because often the only thing he can manage is a high energy milkshake,or a jacket potato with butter or cheese.Without these he would hardly eat at all!.

To come back to symptoms of lactose intolerance-my friends little boy has it-and the effect is instant after having any product with lactose-(sometimes not making it to the loo in time).Whereas my husbands bm's are not always diarrhea-but are often light coloured,suggesting that somethings not right.(What a lovely subject to discuss!).

What I'm saying is that I am hesitant to cut further things from his diet-as there are so few things he eats.Are there any medical tests for lactose intolerance to save doing an elimination diet?Thanks-Nikki

[judy05]

nikki,

I am not lactose intolerant, I am casein intolerant. The lactose refers to the sugar

in dairy but casein refers to the protein. Just like I am gluten (protein) intolerant

I am also intolerant of dairy (protein). I have tried Lactaid tabs, soy milk, rice milk, goat's milk all of them bother me. I don't get diarrhea but as I said before

I do get some bloating. My main problems are foggy - head feeling and aches and pain. I am able to tolerate a small amt of hard cheese and I drink orange juice fortifird with calcium because I can't tolerate calcium either. I don't think it would take much time to find out if it is dairy, maybe in a few days he could eat other

things. I used to drink OJ mixed with a little honey and a raw egg, that would be nutritious and easy to swallow. I think that York labs could test for casein intolerance.

As for the color of bm' s, my GI doc said not to worry about the color unless

they have bright blood or coffee-ground consistency which would indicate bleeding.

your husband sounds very seriously ill and I hope you find the answers you are searching for.

As I read your original posts I see that he is taking some supplements that I am

not familiar with, like Calogen. Are you sure all of the meds and supplements are

gluten-free?

[nikki-uk]

Hi Judy, thanks for your post.

All prescribable drugs in uk are gluten-free.He's gonna try going 'lactose' free at least until we can get tests done.Cutting out dairy seems too hard at the moment-about the only thing he eats is jacket potato with butter & cheese !

[Canadian Karen]

Hi Nikki,

Is there lactose free margarine over there? Here in Canada, we have Fleishmann's lactose free and it is also gluten-free. Also, my GI said if I were to have cheese, hard brick cheese (I prefer old cheddar) has the least amount of lactose.

Hope he feels better soon......

Karen

[debmidge]

Nikki,

Your husband's condition sounds like my husband's but just a notch worse. Unfortunately, I'm at the same point that you're at. I have a feeling that my husband too should eliminate dairy, but for him too that's the bulk of his calorie intake. He can't tolerate soy, vegetables and fruits nor spices and herbs or tomato based foods. Every meal for him has a dairy ingredient in it which cannot be eliminated. He weighs 130 now (it took him over a year to gain 2 lbs.) at 5' 10" tall (when I met him he was 24 years old and weighed almost 180 lbs - he used to work out and was able to carry this higher weight. His celiac disease kicked in when he was 27 years old and since then he's been between 125 lbs and 155 lbs).

Medicine knows so little about this disease at this point; I wish they'd do a study of people like our husbands who went many years undiagnosed or misdiagnosed. The people who get diagnosed quickly seem to get back on track rapidly while those who have gone for decades without answers lag behind and develop other health conditions due to this. I'd like to take my husband to a doctor who specializes in Celiac (not as gastro - but someone who understands the disease from every aspect). Many a night I went to bed with tears in my eyes worrying if he was going to get worse. I know his neurological system is affected but I am hoping that the pheriphial neuropathy is as far as it will get, although he did have a mini black out last week which lasted a few seconds.

How long does it take for him to get ready to go out to a doctor's appointment? How do you handle social situations such as family gatherings like weddings, birthday parties? My husband doesn't get out much either due to a lot of reason.

Take care of yourself and make sure you're getting your rest etc. I wish I can give you a strategy for inner strength, but I'm not too strong myself. So I take each day as it comes and wake each morning to the hope that this new day will be better.

Deb

[Donna F]

This sounds like I was too, though worse than I was. I lost weight rapidly, could barely walk, felt dizzy, tired and weak all of the time. I had very, very low blood pressure and blood sugar. I had the numbness, bone-pain, twitches etc. My doctors thought I had MS for a long time, but an MRI never found leisions on the brain. Sometimes people have trouble with MS before they ever have leisions, but, in your husband's case, it sounds like, if he does have MS, it would probably show due to the severity of his symptoms.

I know someone else here has recommended this, and I didn't see your reply about it. If he has never had an MRI, please ask his doctor about one. It's simple and may be able to finally tell you what is going on. He definately has neurological symptoms, and an MRI will be able to look at the brain and see what may be going on there. Please, please explore this if you haven't already.

Bless you,

-donna

[lovegrov]

Didn't read every word but is your husband taking a probiotic? If not, it might help and certainly won't hurt.

richard

[Rikki Tikki]

Hi Nikki:

If it's any help several years ago I had a brain tumor removed. Before the surgery they found lesions on my brain and thought I had MS based on that and other symptoms. I have read either here that many people with celiac also have lesions on their brains. Food for thought.

I agree with everyone, it seems the longer it takes for the diagnosis of celiac the harder it is for the body to recover. I went with at least 15 years of symptoms before the doctor checked. That after being told about 10 years ago that my bloodwork showed a disease called celiac but it was so rare he was sure I didn't have it. I believed him and suffered several more years thinking I had IBS and was somehow doing it to myself.

As far as the steriods, I took them for something else recently and found a very pleasant side effect. My stomach stopped churning and I had an appetite like I had not had in many years. I don't think I was on them long enough for any side effects, 14 days, but what a difference.

I have to have a repeat colonscopy in 1 1/2 weeks and find myself more scared than the first time. He wants to do it again because he had removed several pre-cancerous lesions 3 years ago. Does anybody have any suggstions that can help psyc me up for it. I am so ready to cancel it but I know that would be a foolish thing to do. Please help

Sally

[judy05]

Hi Nikki,

I am glad to hear that you are going to try to limit lactose, that's a good first step. I don't usually have a problem with butter and as someone else said try to stick with hard cheese even if you have to melt it down for him, because it contains the least amount of lactose. He is so lucky to have a wife like you. I also have a wonderful husband who cooks for me and reads labels and call companies. I hope things go better for you, i'll keep both of you in my prayers.

[nikki-uk]

Thanks all for your posts.

In answer to your questions regarding his neurological state,he is on a waiting list to see a neurologist-however there is only one neurologist at my hospital(it's ridiculous)-so he can expect a year wait.

I know MRI's have been mentioned to pick up lesions(hate to think of the waiting list for that!)but my husband did have aCT scan of the brain 9months ago when he was admitted to hosp for severe weight loss.

The CT was clear(he was suffering terrible headaches),but it's since then that the symptoms have really kicked in. (ataxia,gait)

He was also tested for TB(chest pains),had a lumber puncture,thyroid screen,diabetes test,CT of stomach,many x-rays,HIV screen(scary time waiting for that result!)all negative!!

It would seem that neurolgical symptoms are not as rare as I was first led to believe.The only thing that puzzles me is why his neuro symptoms have got worse since going gluten-free-maybe the lack of vitamins being absorbed if it is refractory celiac disease?

Thought he should try to eliminate lactose just to rule out intolerances hindering his progress.Cannot afford to get york tests done for him-obviously he is not working and with 3 kids it's out the question.

Deb,inanswer to your question'how does he cope with family get togethers'--He doesn't!He really only summons the strength to go out for docs appts(what fun!)& that just wipes him out.

I generally have to help him get dressed as he is so very weak.He cannot get jumpers on ,socks and shoes etc,so it takes about an hour,& then he's exhausted before we go.He doesn't drive any more.

I'm sorry to hear you're in a similar situation,but you just have to play the hand that's dealt you,don't you?Good to know that there are others understanding my position.

Thanks all for your posts,good luck!