Really Worried About My Dad

[Renth]

Hello, I am a new member and very glad to have found this board! I am 22 and was diagnosed in 2003, very quickly because I have a wonderful family docotor who stayed on my case until I was well, he ironically then found out he and his son have it too. I have been doing very well on my diet a few early hiccups in the road but now I am doing great but my dad is of my concern now. He has been having horrible horrible gastrointestinal problems for years. He has diarreha constanlty and terrible painful gas and never has any energy. The Gastrointerologist diagnosed him with ulcerative cololits and have him on a ton of steriods and a handful (literally) of other pills. He hasn't really had any kind of signifigant relief and I understand that that disease is really hard to treat but I can't help but think his symptoms are so much like mine were. His entire side of the family has always had stomach type problems. He has been blood tested and it came back negative, but when I was tested only two of the three indicators came back positive but after a biopsy the same Gastroninterologist that sees him said I had Celiacs. My stepmom too is convinced that part of problem is gluten related and she put him on a gluten free diet for a week which I told her wasn;t long enough to help him see real results but he wouldn't put up with it for any longer. So I guess what my question is, what would you all recommend we do? Is it possible to have Celiac's and still have a negative blood test? I just hate to see him on all those harsh drugs without any relief if the problem could be gluten related.

[Lisa]

Welcome to the Board!

There is a wealth of information on this site. I too, and glad you found us.

I am sorry that your father is having a difficult time. To answer you question... A positive blood test can rule Celiac in, but a negative blood test cannot rule it out. They are not always reliable.

Has your father had an endoscopy exam and a biopsy? The most conclusive testing for Celiac is a positive response from the gluten free diet.

Would he be willing to go 100% gluten free?

[Renth]

Thanks for the response! I think he's had about every other gastrointestinal test but an endoscopy and biopsy, I think I'll have to talk to my stepmother about it she's usually the one that can get him to do things or atleast go with him to the doctor and ask him about it. You know I almost think that that stubborn father of mine would rather take all those harsh medicines that aren't helping than to go gluten free. I try to bake a lot of the stuff he likes gluten free to see if that will help show him that you can make just about anything gluten free to see if that will entice him to give it a go again but in the end it will have to be up to him.

[sixtytwo]

You can get this at any stage in life, however, it probably was in your system for some time---I can go back on certain incidents in my life when I was so sick after eating a major sub sandwich or something like that---never put it together, though. My granddaughter who is nine now, has had it since she was one, I got diagnosed when I was 58 (I am now 62) and my mom got diagnosed when she was 88. My mom has had so many digestive problems that if she had been properly dignosed many years ago, she probably would be better now than she is, but I think her insides are trashed. As hard as she tries to eat gluten-free (and I think she is doing a pretty good job of it) she still get diarrhea at times. We both get uncontollable diarrhea when we definitely get a good dose of gluten when we are unsuspecting. I am careful for that not to happen as it is very unpleasant. I also get kind of sick to my stomach and like I am kind of lethargic, I have to sleep it off before I am better. I tested negative with the blood test and postitive through Enterolab/have the gene. My mom tested negative the first blood test and postitive the second one, my granddaughter was classic celiac through blood and endoscopy. Everyone is a little different, but we all have it. Barbara

[corinne]

I too have colitis (collagenous) not celiac. My mother has celiac. These diseases can be distinguished by endoscopy. I went gluten free (and soy, casein free and no nuts, fibrous veggies etc. for the colitis) and my symptoms improved tremendously. I am now symptom free about 90% of the time.

It should be noted though that a gluten free diet does not work for everyone with colitis and most people with colitis will still have flares and may need medication. I am fastidious about cross-contamination (no gluten at all in the house etc.) and have been gluten-free for almost three years, but I still average about 6 flares a year and usually need meds to calm things down. During a flare I only drink water with a little salt/sugar and I still have D until I take meds.

[elye]

I don't want to hijack things, here, but this is a great opportunity for me to clear up a diagnostic issue that has long confused me. How can a clear line always (or ever) be drawn between colitis, crohn's and celiac? If the symptoms of colitis can be alleviated by eliminating gluten, why isn't it considered celiac in this case? I understand colitis as being the inflammation and ulceration of the large intestine and the ileum--and from here one can make an easy connection to the definition of celiac disease. The similarities are striking. So many people have gone, on average, eleven years before being properly diagnosed with gluten intolerance, and have been during all that time misdiagnosed with crohn's, IBS or colitis. I keep reading cases like this, to the point where I sometimes have to wonder if there really aren't any other gastrointestinal illnesses...just celiac!

[par18]

I don't want to hijack things, here, but this is a great opportunity for me to clear up a diagnostic issue that has long confused me. How can a clear line always (or ever) be drawn between colitis, crohn's and celiac? If the symptoms of colitis can be alleviated by eliminating gluten, why isn't it considered celiac in this case? I understand colitis as being the inflammation and ulceration of the large intestine and the ileum--and from here one can make an easy connection to the definition of celiac disease. The similarities are striking. So many people have gone, on average, eleven years before being properly diagnosed with gluten intolerance, and have been during all that time misdiagnosed with crohn's, IBS or colitis. I keep reading cases like this, to the point where I sometimes have to wonder if there really aren't any other gastrointestinal illnesses...just celiac!

I tend to agree with this line of thinking. There seems to be an endless supply of medical terms (along with a corresponding prescription drug) to treat almost any symptom we can come up with. There also seem to be "specialists" in this area. I don't mean specialists in the sense of knowledge but rather those who put patients they cannot cure in one of three catagories. I would venture to say that 90% of all misdiagnosis start out as either "stress related", "IBS", or "it's all in your head". It is not surprising that each of these can be treated with some sort of medicine or therapy. In a perfect world if a person is suffering from some type of gastro intestinal issue then a "diet elimination" might be the first order of business. The main stumbling block with a slower acting condition like Celiac is the absense of severe symptoms in it's earliest stages. If it would show itself more like an allergy (thank heaven it doesn't) in which the person goes into shock and can die then maybe people would think more about trying elimination first. I also would like to see how those people with crohn's or colitis would react to a gluten free diet without any medicine.

I must say in closing what I feel is the worst excuse I have heard or read for not doing diet elimination first. I don't mean the one in which the results of testing will be affected (it will) but rather that it (Celiac) may not be the problem. To me this thinking is the most obivious symptom of the real issue and that is "DENIAL".

Tom

[gfpaperdoll]

This is just my personal opinion but I think that more & more people are seeing this as true for themselves personally. I think that almost all IBS, Crohns, MS, Colitis etc etc. is just a symptom of celiac. I think that gluten & for the most part wheat is killing more people than anyone can imagine (well except for me, the picture looks perfectly clear to me). I also think that we are in the dark ages when it comes to the practice of medicine.

You know the saying Location, Location, Location - I say Diet, Diet, Diet

I also think back to the 50's when they put out those TV spots about how safe the DDT?,( anyway the stuff they were spraying for bugs), was that they were spraying for mosqitoes. They showed children sitting in the insecticide fog eating a picnic or running along with the fog sprayer. Those children did not get sick, so that was proof that it was safe. well now those kids are all dead from cancer. Thank goodness my mother was smart enough not to buy into it & not only would make us come into the house but she would close all the windows etc.

But you know we have all bought into those commercials about wheat & dairy & don't even get me started on soy... I think now we are beginning to think for ourselves...

[elye]

I, too, often find myself comparing this huge lack of knowledge on celiac disease to money-making killers of years gone by, things that now make us shake our heads in disbelief--DDT, cigarettes. How could we have not known? How can millions of medical professionals, and suffering patients, not know the insidious, far-reaching dangers that this little protein can do to so many? How can it still be so commonly misdiagnosed? This is an excellent opportunity to mention, as I try to do in whatever posts I can, the movement that was started in a thread (more than one over the years, actually) to get Oprah on board about the reality of celiac disease. If we could catch her attention, something may actually happen, something more than a suddenly aware celiac patient writing about it in their neighbourhood paper. Oprah's website has a section where you can type in short descriptions of show ideas, and at one time we decided to launch a deluge of requests for an hour on celiac. The more her producers hear about this, the better our chances. And Renth, perhaps your dad would see the show and the rest could be history.

[Renth]

Thank you all for the feed back. It really is interesting the connections between all types of gastrointestinal disorders and gluten. He's traveling abroad right now but when he gets home I am going to try again to see if I can talk to him about going gluten free becuase even if it isn't celiac's it seems like it could help his colitis out he is still having very frequent flares atleast once a month and he can't go to work or do anything becuase of them. I talked to my stepmom about it again and she agreed that he really needs to do it so maybe between the two of us we can get him to see reason. You know I also wish I could go back to all the relatives on his side which have since passed on and have them tested too, it really is amazing once you get a diagnosis how you see the long chain of similar problems in the family.