I Really Need Some Advice!

[Coyote80]

My story is strange, but I really need some advice and fear alleviation from it. My father passed away one year ago. He was having a renal biopsy and the doctor severed an artery which caused him to pass away within two weeks. The reason he was in the hospital in the first place is that for two years they could not understand his health problems. He has Systematic Lupus, Neuropathy, Dental Enamel Hypoplasia, Sjogren's Syndrome, and I believe an onset of Diabetes. He was also very thin most of his life and even before diagnosis it seemed like nerve problems were present. At this time I had no idea what Celiac disease was, but now there is no question that this is what caused it! I looked through all of his old papers and asked my family, because he never mentioned them testing him for Celiac, and I am certain he never had a bowel biopsy done. I never thought his team of doctors were up to par, hence him always ending up in the hospital. From what I have read I would have thought this was one of the first procedures they would have done!

I am terrified to have a biopsy done hence my father's story, but I know since it is highly hereditary I have a good chance of having Celiac. I know it is not the same type of biopsy, but it still scares me. I had blood work done and it came back negative, but I was sick at the time and had not eaten much of anything that week, so that is understandable. I have started the elimiation diet and have been gluten-free for two weeks now. Week one I was ok, but now I am constantly fatigued, I have a rash on my chest, I have been running a small fever for two days, my stools have turned from normal to very abnormal looking (and they are frequent), and I feel nauseated when I eat. Also I forgot to mention I keep getting a really sharp pain in my stomach. It is not unbearable but I have never had this feeling before.

Before I started being gluten-free I had frequent urination to the point I did not sleep well at night and even going for a long walk I would have to stop in a store to pee. Since I am still freqent but a little less, so I was wondering if that is a coincidence. Also a clue I had was beer. When I drink beer (and I don't mean obliterated drunk but just one or two) I pee so much I can barely sit down and half of the time my stomach hurts and I vomit soon after. I can have wine with dinner and this does not happen at all.

I had been given advice to try the elimination diet from a lady on another forum site, as her doctor's were convinced and even her biopsy came back negative so it was the only way she could tell. Is this a good way? Is what I am experiencing now signs of Celiac? I know a lot of people or most that read this have had a biopsy and could you tell me if this is a dangerous procedure. My heart races at the thought of having one, so if elimination diet is good enough please let me know. Also one more thing...I recently moved to France and for Celiacs they have a good system. You are reimbursed 75% for gluten-free foods. You just have to mail in the receipts and they send you a check. So is a biopsy the only way my doctor will say yes, you have Celiac?

I really appreciate any feedback!!!

[luvs2eat]

My story is strange, but I really need some advice and fear alleviation from it. My father passed away one year ago. He was having a renal biopsy and the doctor severed an artery which caused him to pass away within two weeks. The reason he was in the hospital in the first place is that for two years they could not understand his health problems. He has Systematic Lupus, Neuropathy, Dental Enamel Hypoplasia, Sjogren's Syndrome, and I believe an onset of Diabetes. He was also very thin most of his life and even before diagnosis it seemed like nerve problems were present. At this time I had no idea what Celiac disease was, but now there is no question that this is what caused it! I looked through all of his old papers and asked my family, because he never mentioned them testing him for Celiac, and I am certain he never had a bowel biopsy done. I never thought his team of doctors were up to par, hence him always ending up in the hospital. From what I have read I would have thought this was one of the first procedures they would have done!

I am terrified to have a biopsy done hence my father's story, but I know since it is highly hereditary I have a good chance of having Celiac. I know it is not the same type of biopsy, but it still scares me. I had blood work done and it came back negative, but I was sick at the time and had not eaten much of anything that week, so that is understandable. I have started the elimiation diet and have been gluten-free for two weeks now. Week one I was ok, but now I am constantly fatigued, I have a rash on my chest, I have been running a small fever for two days, my stools have turned from normal to very abnormal looking (and they are frequent), and I feel nauseated when I eat. Also I forgot to mention I keep getting a really sharp pain in my stomach. It is not unbearable but I have never had this feeling before.

Before I started being gluten-free I had frequent urination to the point I did not sleep well at night and even going for a long walk I would have to stop in a store to pee. Since I am still freqent but a little less, so I was wondering if that is a coincidence. Also a clue I had was beer. When I drink beer (and I don't mean obliterated drunk but just one or two) I pee so much I can barely sit down and half of the time my stomach hurts and I vomit soon after. I can have wine with dinner and this does not happen at all.

I had been given advice to try the elimination diet from a lady on another forum site, as her doctor's were convinced and even her biopsy came back negative so it was the only way she could tell. Is this a good way? Is what I am experiencing now signs of Celiac? I know a lot of people or most that read this have had a biopsy and could you tell me if this is a dangerous procedure. My heart races at the thought of having one, so if elimination diet is good enough please let me know. Also one more thing...I recently moved to France and for Celiacs they have a good system. You are reimbursed 75% for gluten-free foods. You just have to mail in the receipts and they send you a check. So is a biopsy the only way my doctor will say yes, you have Celiac?

I really appreciate any feedback!!!

If there's one thing I've learned, it's that no 2 celiacs have the same symptoms... so your symptoms could be celiac related.

The frequent urination is often experienced by people w/ diabetes... along with extreme thirst.

It sounds like a good work up is needed. The biopsy to confirm celiac diseasae is done by endoscopy. Don't be afraid of it... it's an easy procedure. They anesthetize you and pass a tube down your esophagus, thru your stomach to your small intestine. There's no pain and no real prep except not eating after midnight.

Good luck!

[Skylark]

In Europe, you have to have positive lab results or biopsy to get the reimbursement for gluten-free food. If your blood tests are negative, that's your only other option. And by the way, a week sick and not eating much would not change the results. It takes longer on a true gluten-free diet for the antibodies to go away. The biopsy is not dangerous at all, as a doctor is going into a natural hole (your mouth!) to get the biopsy. There is no cutting as there is with a renal biopsy. I am very sorry to read what happened to your father and I understand why that could leave you with a lingering fear of medical procedures.

If you decide it's not worth facing the biopsy for a possible diagnosis, the diet works fine to find out if you're sensitive to gluten. There are plenty of people who can't eat gluten but come up negative on the tests. The tests are not that good. If you are experiencing a lot of symptoms going gluten-free it's a sign that gluten WAS doing something to your body. You do need to be eating it for the biopsy to be meaningful.

[crystal blue]

The above info is good advice and you should have it done, but, if you have pain under the breast bone and towards the belly button get your doctor to send you to a endocrinologist for an MRI on your pancreas and also your gall bladder. It is possible you may have gall stones and in turn this can cause a stone to plug the ducts in the pancreas and inflaming it and left untreated it can create scar tissue. If not treated it can cause nausea (to the point of vomiting) slight to very painful attacks and they can become more frequent. You do not have to have Celiac Disease to have this problem. My aunt just went through this and it was her gall bladder and since the gall bladder and pancreas are very close together a stone had lodged in the pancreatic duct. After a few weeks in hospital she was fine and she's 83 years old. Also get tested for lactose intolerance, but not all Celiac patients have that.

Just because you have Celiac in the family does not mean everyone in the family will get it. My husband has Celiac Disease and has 3 siblings who do not have it and neither did his parents, but the strange thing is all his siblings and several relatives have other autoimmune system diseases so autoimmune diseases are certainly prevalent in his family.

The squeaky wheel gets the oil and you have every right to have proper medical care so talk to your doctor about further tests and if he is not willing to do further testing try finding another doctor that will listen to you. Meanwhile, go on a proper diet of low fats; low salt; low carbohydrates; lower your red meat intake to a couple of times a week; buy free-range chicken and eggs; try to introduce fish into your diet; lots of vegetables and fruits. Do not go on a Celiac Diet unless you know for sure you have it. Don't forget to drink lots of water every day to flush out your liver and kidneys. Good luck!

[Coyote80]

The above info is good advice and you should have it done, but, if you have pain under the breast bone and towards the belly button get your doctor to send you to a endocrinologist for an MRI on your pancreas and also your gall bladder. It is possible you may have gall stones and in turn this can cause a stone to plug the ducts in the pancreas and inflaming it and left untreated it can create scar tissue. If not treated it can cause nausea (to the point of vomiting) slight to very painful attacks and they can become more frequent. You do not have to have Celiac Disease to have this problem. My aunt just went through this and it was her gall bladder and since the gall bladder and pancreas are very close together a stone had lodged in the pancreatic duct. After a few weeks in hospital she was fine and she's 83 years old. Also get tested for lactose intolerance, but not all Celiac patients have that.

Just because you have Celiac in the family does not mean everyone in the family will get it. My husband has Celiac Disease and has 3 siblings who do not have it and neither did his parents, but the strange thing is all his siblings and several relatives have other autoimmune system diseases so autoimmune diseases are certainly prevalent in his family.

The squeaky wheel gets the oil and you have every right to have proper medical care so talk to your doctor about further tests and if he is not willing to do further testing try finding another doctor that will listen to you. Meanwhile, go on a proper diet of low fats; low salt; low carbohydrates; lower your red meat intake to a couple of times a week; buy free-range chicken and eggs; try to introduce fish into your diet; lots of vegetables and fruits. Do not go on a Celiac Diet unless you know for sure you have it. Don't forget to drink lots of water every day to flush out your liver and kidneys. Good luck!

Thanks! I will. Where I just moved here I have two more weeks for my healthcare to kick in. I filled out the paperwork and sent it in and they said it will be 3-4 weeks from the point they receive it. As mentioned above I need a good workup. I have already met with the man who will be my general doctor and I think he will listen and take the necassary measures. I am considering seeing him now so by the time I get into the specialists my healthcare will be in effect. Here you see a general doctor and they write prescriptions for you to see other doctors even down to the bloodwork. They are strictly consultation in most cases. I was just reading about gallbladder and pancreas problems and I don't have dark urine or the type of stools they are talking about on the information sites, so hopefully it is something else causing this. I do have a rash on my side and under my breastbone however, but I can't find any correlation. Possibly your aunt had something similar with a rash? I really appreciate the feedback I am getting on this site!