Frustrated!

[SherriRoy]

I'm a 22 year old woman in her 5 year of university. Here is my problem:

I was diagnosed at 20 with celiac's disease. I had been sick with diarrhea and cramps, bloating, constant running to the bathroom, no relief with evacuation and sever gas for over 2 years at that point. A GI specialist sent me to get the blood test where i came out half "positive" and half negative. I was then biopsied and told that there is "mild" damage to the villi. I changed all my eating habits..cut out all wheat and was supremely stict with my diet to find out that my symptoms only got worse. I had never benefited from the diet. I went to doctors and asked them why am I not getting better? They all just said maybe you just need to be on it longer. They wouldn't even give me consideration that something else might be wrong with me. At this point..I was home bound becasue my symptoms were so painful and uncontrollable. Two years go buy on the stict diet..and I run back to my doctor begging that he listen to me and that the diet isn't working. He finally concedes that I might have had a misdiagnosis, so he puts me back on wheat for 6 weeks for another biopsy. I had taken the celiac blood test a few months before that and came out really really negative. So negative it was a 1.6 when four and under is negative. So I go back on wheat and enjoy a sandwich for the first time in two year!! It was quite gratifying. I was expecting to be terribly ill. I thought that it would knock me out of commission for quite some time, but the contrary happened. Iwas fine. There was absolutely no chang in my symptoms, the number of times i had to go to the bathroom, the out of controlable bowels. Nothing changes so at this point I"m almost positive that I don't have celiac's disease. I go in for the biopsies which included a sigmoidoscopy and a gastroscapy. He biopsies me in 6 places and finds that I am swollen through out. I'm labeled something like "mild duodenitis and mild colitis." I'm told that swelling can be a sign of celiac's but I don't know. The villi wern't damaged..but my duodenum had "chronic innflamation." I go back to the doctor about the results and he wants to do the blood test on me one more time. I wait 2 weeks for the simple results to find out that the test is now positive. BUT my symptoms have not changed.

My questions are... I've seen documents from doctors saying that the real proof that you have celiac's disease is not in the biopsy and blood test but weather or not you improve on the diet. Since I have not improved even remotely....doesn't that mean I still have it? And can you just go off being inflamed as physical proof that you have the disease when the villi are not laying down..but are stull up?

Can you have A-sumptomatic celiacs disease? Can you have the disease even though the diet doesn't help it? has this happened to anyone else????

Please, let me know. Iwould much appreciate it.

Thank you

[aikiducky]

It's possible to have celiac disease that doesn't improve with the diet, it's called refractory then. It's very rare, but you could just be the rare unlucky one.

At least your bloodtests went from positive on gluten to negative when gluten free and again positive on gluten. I would think that was a fairly good indication that you do indeed have it.

Inflammation of the intestines is the beginning stage... flat vili is the end stage. The vili don't just go flat overnight. So the fact that your vili aren't flat doesn't necessarily mean you don't have celiac disease.

You wrote that you cut out all wheat from your diet. I hope you meant that you cut out all GLUTEN from your diet? Otherwise, of course, you've been poisoning yourself all this time and it would be logical that you haven't gotten better. But you probably know all this.

Have you tried cutting out other foods from your diet? Dairy can give very similar symptoms if your sensitive to it, and so can some other foods.

I do hope that you find an answer, it sucks to have a diagnosis and a treatment and still not get better. Hang in there.

Pauliina

[bluelotus]

I know nothing about refractory celiac, so I can't say much there. But, based on the above post, it sounds likely. I am writing b.c I wonder if you have considered other food intolerances? I felt better for a month or two after going gluten-free (and I know you haven't at all), but then started to get sick again. It appeared to be dairy. I cut that out, felt fine for a time, then was getting sick again and realized it was egg. Same thing happened with corn. You might want to consider these things as well, many people with celiac have developed other food intolerances. Also, check on contamination issues in your house (dishes clean enough? food prep areas free of gluten?) and other household products (soap, shampoo) - these issues can make you sick. Gluten-free means no gluten, not even crumbs......the tiniest amount has made me sick and kept me from feeling my best.

I am sorry you feel so badly and I hope things get better soon!

[Merika]

Sorry to hear you are still feeling badly. It does indeed sound like you have celiac. 6 weeks is not long enough to be on gluten for the body to produce antibodies and show lots of damage, if you've otherwise been gluten-free. Which also corresponds with your results, and the last set of tests which showed more damage.

I would encourage you to look into other food allergies which may be stopping you from feeling well. Often the damage done while eating gluten causes these allergies. Some will go away in time after the damage heals. Some may not. I found I was allergic to egg, soy, and many other things. I do feel better when I don't eat those items. Search the archives for ELISA blood test, to find who will run the tests - the common skin prick tests at the allergists office are useless, IMO.

I have been gluten-free for not quite 2 years and still don't feel the way I did before I started having celiac symptoms. And I don't think I'm alone in that....

Merika

[Nevadan]

I found I was allergic to egg, soy, and many other things. I do feel better when I don't eat those items. Search the archives for ELISA blood test, to find who will run the tests - the common skin prick tests at the allergists office are useless, IMO.

Merika

<{POST_SNAPBACK}>

I have recently used York Nutritional Labs for their ELISA testing. Their claim to fame is that they only require a couple of drops of blood - taken at home with a collection kit they send. You do a pin-prick in the finger like diabetics have to do. I didn't find it painful at all. The downside is that they are very slow. I mailed them my samples over a month ago and still don't have results, but they were impacted by the hurricane that came across Florida where they are located about 6-7 weeks ago - maybe that explains their slow results.

George

[Guest BellyTimber]

The three things - difference in symptoms on and off gluten, blood tests (a specific series) and biopsy - taken together should tend to point to a diagnosis.

Numbers shouldn't be used as a diagnostic criterion but as a fine tuning tool in management and assessement.

The symptoms you described and the kind of damage observed could possibly point to something like celiac disease as well as colitis or duodenitis.

Some people have Crohns together with celiac disease, is duodenitis like Crohns?

In relation to celiac disease I suspect the term 'asymptomatic' is often a misnomer because sometimes symptoms that are symptomatic are not considered so.

I have had almost as bad intestinal symptoms since going gluten-free-WF well over 2 years ago, as I did when they flared up a few weeks prior to that, but some other parts of my body improved. I don't think 2 years abnormally long to continue having these troubles after changing diet, though some people think so.

In particular, in your case you felt the acute pain for a long time before changing diet, that means a lot of damage was done which may take a long time to gradually improve.

The damage was probably being done to us both a long time earlier even if we did n't experience any or much pain.

Have you found associations and message boards to do with colitis etc and people who can help you from their experience?

It's one digestive tract and everyone has their unique areas and types of damage and rates of recovery and remedial actions.

Hoping you come up with the right management somehow & you experience improvement ...

[SherriRoy]

Yes I did go gluten free in those two years of being on the diet. Compeltely gluten free! I was anal about it. I know all about the crumbs, surfaces of foods. My family and I have worked in many food industry places, I've had lots of experience. When I moved into my house, no gluten was allowed in, and since then I've been very very careful. So I'm sure I've been gluten free to the utmost of my ability. At least I like to think so.

I don't bleive i was damaged when I was initially diagnosed..becasue they said I was just begining to show damage..and that I was very mild. Even though I had severe symptoms, the doctor said that there was barely any damage showing. Unfortunately my symptoms got worse on the diet after the first year. There was none in the slightest bit of improvment.

I've been to naturopathic doctors that do the diet cut out foods thing, to no avail. I ate rice for weeks..just rice.and still had so many problems. I cut out dairy so many times now I can't count and still there is no difference. I've gone as far as cutting fruit out, cooking fruit, cooking veggies to mush etc. I don't like soy products so I don't usualy eat them..so I can eliminate that as a problem.

I've got the naturopathic doctor to sya that there is nothing he can do for me.

I'm so frustrated, becasue whether I eat rice or eat a hamberger it's all the same. The same results, the same pain, the same spasms, the same number of times going to the bathroom.

Is there no one else like me out there?

I swear it's hard to think that you can do everything right and have no positive results. Physically when scoping i've never shown a lot of damage, then why are my symptoms so drastically bad? The doctors can't answer me. I've done all the IBS drugs up to narcotics..and even those don't work. I've even done dygestive enzymes, message therapy for my stomach, rieke etc. I've delt with increasing fiber, imobilizing my bowels, supplementing diets etc. Nothing has made the slightest bit of difference besides causing more cramps.

<sigh>

It's tough.

Thank you all for all your posts. I appreciate it.

The three things - difference in symptoms on and off gluten, blood tests (a specific series) and biopsy - taken together should tend to point to a diagnosis.

Numbers shouldn't be used as a diagnostic criterion but as a fine tuning tool in management and assessement.

The symptoms you described and the kind of damage observed could possibly point to something like celiac disease as well as colitis or duodenitis.

Some people have Crohns together with celiac disease, is duodenitis like Crohns?

In relation to celiac disease I suspect the term 'asymptomatic' is often a misnomer because sometimes symptoms that are symptomatic are not considered so.

I have had almost as bad intestinal symptoms since going gluten-free-WF well over 2 years ago, as I did when they flared up a few weeks prior to that, but some other parts of my body improved.  I don't think 2 years abnormally long to continue having these troubles after changing diet, though some people think so.

In particular, in your case you felt the acute pain for a long time before changing diet, that means a lot of damage was done which may take a long time to gradually improve.

The damage was probably being done to us both a long time earlier even if we did n't experience any or much pain.

Have you found associations and message boards to do with colitis etc and people who can help you from their experience?

It's one digestive tract and everyone has their unique areas and types of damage and rates of recovery and remedial actions.

Hoping you come up with the right management somehow & you experience improvement ...

<{POST_SNAPBACK}>

[jajus100]

You must be incredibly frustrated! Since you have tried everything else, I would try to get in with some gastro "guru" type doctor. I would maybe write to someone at the Mayo Clinic or something like that. Explain everything you have gone through. Obviously something isn't right. There must be something that someone can do for you. I feel so badly for you. My absolutely "unexpert" opinion is that you do have multiple things going on. You probably have Celiac, but that may be the least of your problems.

Anyway, don't know if you're religious, but about all I can offer is some prayers....

Good luck, though!

[SherriRoy]

You must be incredibly frustrated!  Since you have tried everything else, I would try to get in with some gastro "guru" type doctor.  I would maybe write to someone at the Mayo Clinic or something like that.  Explain everything you have gone through.  Obviously something isn't right.  There must be something that someone can do for you.  I feel so badly for you.  My absolutely "unexpert" opinion is that you do have multiple things going on.  You probably have Celiac, but that may be the least of your problems. 

Anyway, don't know if you're religious, but about all I can offer is some prayers....

Good luck, though!

<{POST_SNAPBACK}>

I would love all the prayer I can get. I am religious, but being in such an up hill battle still leaves me blind to why I'm going through this. It's been difficult to be self assured in my faith when feeling like every step forward brings you two or three steps back.

Iappreciate you opinion, and I also believe there is something else wrong. Trying to get a doctor to believe me has been an on going battle of 3 years now.

But I still my hope is there, I just pray it becomes a reality.

Sincerely,

Sherri