Help - My Symptoms, And Your Opinions/thoughts Please

[disneymom62]

I'm new here, and thought I'd ask all of you for your opinions.

Being the daughter of someone with colon cancer (dad had it when he was 46, same age as I am now) I get regular screenings. I have diverticulosis, and struggle with occasional bouts of diverticulitis. About 5 years ago I went to my GP about bouts of severe cramping followed by diarrhea. He chalked it up to a bacteriological infection, put me on antibiotics and sent me on my merry way. I have noticed over time that these became more frequent - from a couple times a year to several times, to once a month, and within the last 4 - 6 months, a good once a week. It became increasingly difficult to eat out with friends or on business, as I never knew when I would be doubled over 30 minutes later then running to the bathroom. My intestines are always in a constant state of gurgle, and I'm constantly fighting constipation then the cramps after some meals, I'm bloated, painful, mucousy and gassy. I fight with insomnia and just being 'tired'. I changed GPs this past fall, and out of frustration, saw her about my "issues". She ran blood for the normal panels for white counts, cholesterol and such, and set me up for an ultrasound on my gallbladder and a visit to my GI doc. The blood came back good except for Vitamin D deficiency and the gallbladder came back clean. In the process of the ultrasound they discovered some growths on my liver for which I've since had a CT scan, and they came back as benign cysts and hemangioma. I also take Synthroid for thyroid issues, post-total abdom hysterectomy a few years ago.

I saw my GI about a month ago at which time he took me off dairy and sent me off for blood testing and then stool sample testing for a couple of things. Getting information out of his office has been a little difficult. Two weeks ago I had my colonoscopy. At that time, he advised me that my blood work for the celiac screen had come back high, and the other tests were fine. He told me that he would have me come back in for an upper GI scope. 'scopy started, Versed didn't work so I actually (albeit very groggily) talked to him a little during the test - between the "ow, owww, OWWWWW"s. Polyp removed, biopsy taken, and he decides right then and there to do the EGD, instead of having me come back in. WHAAAAAAT??? Alllll righty then, I wasn't exactly in a position to say "no", so I go with the flow. After tests are finished, I'm told that three more biopsies taken, call his office that Friday for results, and continue to stay off the dairy.

So, I call his office that Friday, no results back yet. Call again the following Wednesday, leave message for the nurse who calls me Thursday afternoon. Doc is out for the rest of the week, and he hasn't 'signed off' on my test results yet, so she can't tell me what's going on. HUH?? I told her that he'd already told me that blood work came back "high", can she tell me anything? No, she says, but she will say that there is no cancer, (YAY!) that the lab results are 'complicated', and that she can't give me an "official" diagnosis since paperwork has been not signed off, but it appears that the results are indicative of celiac. They'll likely be sending me to a dietician. I (probably too hastily) posted a question here on Friday regarding popcorn and the movies, but I don't want to eat anything I shouldn't! So, I wait for the "official" word from his nurse, who has told me she would review my file with him tomorrow and call me tomorrow (Monday) afternoon.

Am I being to hasty? Do my symptoms sound like what you guys have gone through? I've read that they can vary greatly, but I wonder how I compare to those of you who have been diagnosed (either recently or not-so-recently). I'm not looking for a diagnosis here - but wonder how normal and typical what I've been experiencing is. Is it severe or just minor sounding? What kind of relief can I look for with a change in diet? What important questions should I be asking his office? What should I look for on the lab reports? I'm trying to learn all I can - and any information that you can give me would be greatly appreciated.

[mastiffmommy]

I didn't wait for my test results to come back before getting off gluten. I started with eliminating wheat for 2 weeks. I felt better so I then elimintated the gluten. It was the best decision I have ever made in my life. I felt so much better within a month and symtoms that I had no idea were related that have plagued me for 20 years go away with each passing month. As I saw no harm in going off Gluten as a trial I had nothing to lose. My tests came back inconclusive but there is no way in hell I would ever have eaten Gluten again - and now when I do I just get really sick. Go off for a trial - you'll probably know if you are on the right track after a month. Can't say for sure but it sure did work for me. I didn't need to see it in black and white to know I felt better (though I understand wanting the official results) Again, still won't hurt to give it a try!

[ang1e0251]

Cut out gluten immediately!! You are lucky to have been tested. I was not able to test when I had a severe rash, DH. I went on the diet to elimanate the rash. I had no idea the other problems would clear up too. My stools became normal, it had been years. Color came back to my cheeks and really a host of other problems cleared up that I didn't even think could, chalked it up to getting older!! I honestly feel 20 years younger!!

Just take the plunge and get started and let us know how you feel.

[sbj]

Being the daughter of someone with colon cancer (dad had it when he was 46, same age as I am now) I get regular screenings. ... So, I wait for the "official" word from his nurse, who has told me she would review my file with him tomorrow and call me tomorrow (Monday) afternoon. Am I being to hasty? Do my symptoms sound like what you guys have gone through?

The blood work usually comes back quick and the pathology takes longer. It takes longer and can be 'complicated' because pathology is somewhat subjective. That is, they are actually looking at a physical sample of tissue under a microscope, etc. and so the pathologist has to make some judgements. (That's in addition to some objective counts that they make.) Sometimes the intern will want to have a different pathologist look at the tissue. Try to relax - I hope you don't have celiac disease. If you don't like what you hear then ask for your results - you have a right to them. Go see another doctor if they are not answering your questions. Since you've already had the endoscopy you can go off gluten anytime you'd like - if you want to. It's very difficult to diagnose celiac based on symptoms alone because there are many conditions that share the same symptoms as celiac. My tummy gurgles a lot even now after going off gluten.

I really wanted to touch on the colon cancer. 46 is quite young - good for you that you are getting regular screenings. My father also had cancer at a young age as did my brother, my uncle, and my grandfather. Is there any other history of colon cancer in your family on either side of the family? I have something called Lynch syndrome (HNPCC). It is a genetic predisposition to cancer. One of the hallmarks of my condition is a family history of colon cancer that strikes at an average age of 44 years. You may want to read up on this condition if you have any other first degree relatives who have had colon, stomach, ovarian, kidney, etc cancer.

[disneymom62]

first of all, thank you all!!

SBJ - yes, 46 was very young. This was back in 1968 - I was 6 years old at the time and have very little memory other than knowing he was very sick for a long time. He has been living with a colostomy for YEARS and is still kickin' at 86. the diagnosis at that time of the cancer was "familial polyposis". He sent me a copy of the hospital report about 10 years ago, I took it to my doc who immediately sent me off for my first GI visit and subsequent colonoscopy. I've been very good about going in since then, and my GI knows of the background. I will definitely look into Lynch Syndrome and learn what I can about it - thank you.

ang1e - I have taken the plunge and been off gluten since Friday. If I had to notice anything so far, and I know it's early to notice changes, but I'm not as bloated.

mastiffmommy - when you say "really sick", can you define? (or is that TMI???) I am off and have been for a few days. Fingers crossed it makes a difference in the way I feel. I will say, as I noted to ang1e's post, I'm not as bloated feeling. that's a plus!

[sbj]

SBJ - yes, 46 was very young. the diagnosis at that time of the cancer was "familial polyposis". He sent me a copy of the hospital report about 10 years ago, I took it to my doc who immediately sent me off for my first GI visit and subsequent colonoscopy. I've been very good about going in since then, and my GI knows of the background. I will definitely look into Lynch Syndrome and learn what I can about it - thank you.

I am very sorry to hear that you may have Familial Adenomatous Polyposis (FAP). This is different than Lynch syndrome. Your doctor is wise to have you screened very thoroughly but you should know that the condition is genetic and there is a genetic test available to determine if you have inherited the gene and whether you may pass it on to your children:

"People with FAP have a 50% chance of passing the condition to each of their children. Genetic counseling is available, and recommended, for families affected with FAP. FAP is caused by a mutation (change) in the Adenomatous Polyposis Coli (APC) gene. A blood test can locate the change in the APC gene which is causing the disease in about 80% of families with FAP. In these families, children can learn if they have inherited the changed APC gene from the parent with FAP. The gene test results will influence the future management of individuals who are at risk for FAP. For example, if the test shows that a person does not have the APC gene mutation known in the family, he or she can avoid many unnecessary colon examinations. If the test shows that a person does have the gene mutation, then the physician will need to be alerted to schedule colon examinations at least yearly and to plan for future treatment when polyps develop."

So if your father had FAP there is a 50% chance he passed it on to you. If a genetic test shows that you do not have it then you may be able to avoid some testing. If a genetic test shows that you inherited FAP then you may want to schedule children (if any) for their own genetic test. Other children of your father may consider genetic testing, as well. And their children should it turn out they have FAP.

Sorry to belabor the point if you already know all of this!

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[mastiffmommy]

first of all, thank you all!!

SBJ - yes, 46 was very young. This was back in 1968 - I was 6 years old at the time and have very little memory other than knowing he was very sick for a long time. He has been living with a colostomy for YEARS and is still kickin' at 86. the diagnosis at that time of the cancer was "familial polyposis". He sent me a copy of the hospital report about 10 years ago, I took it to my doc who immediately sent me off for my first GI visit and subsequent colonoscopy. I've been very good about going in since then, and my GI knows of the background. I will definitely look into Lynch Syndrome and learn what I can about it - thank you.

ang1e - I have taken the plunge and been off gluten since Friday. If I had to notice anything so far, and I know it's early to notice changes, but I'm not as bloated.

mastiffmommy - when you say "really sick", can you define? (or is that TMI???) I am off and have been for a few days. Fingers crossed it makes a difference in the way I feel. I will say, as I noted to ang1e's post, I'm not as bloated feeling. that's a plus!

Hi, thank you for asking -When I eat Gluten now I get instant head fog, a tightness in my head and severe abdominal cramping and diarreha. I usually vomit, my tongue feels weird and slimy and numb and I get tired and thirsty. It sucks but pales in comparison to how sick I was before this was discovered. It is the abdominal cramping that brings me to my knees. It even happens with stupid cross contamination from using the same knife in jelly or something dumb like that. I am getting better with that. At first my body was just so sick that I didn't notice the subtle poisonings.

[disneymom62]

sbj - oh wow! Thanks for that information. I'm going to ask about that test.