HI, ok I feel bad for you as I to am in year 5 of an un-diagnosed illness involving stomach pain. I wanted to know if you did a ct scan with contrast?..I also believe at this point that you should have a full exome genetic test done by a good lab. Insurance may not cover this. You will need a good genetic counselor. If your doc doesn’t at sending you to one, go anyway. This can test for genetic diseases and if you have this SIBO I would think it would show up. Ask the genetic doc if it will. I paid $$ 1250.00 out of pocket for mine. This was a low price and some testing may be more expensive then this. The genetic doc can help you find the best price and Lab to use. But also remember that there are still some diseases that we don’t know about and cant find. Getting this test out of the way is good, then you can focus on non-genetic issues.
Next, def keep the food diary, what you eat, when and what symptoms you have after each day and what you are. IN time you can can see a pattern develop. Many of the sensitivities that we each individually have may not show up on any test, only from our own food diary keeping. Try to keep a limited diet at first, then as you are ok branch out slowly. If anything bothers you, write it don’t take it out of your diet.
Have you had your blood sugar checked and monitored at home with a home kit. They are easy to use. I assume you know which foods to avoid with CSID. It may sometimes be diagnosed in older children or adults, however the frequency of CSID in adults has not yet been determined.Adults with CSID are usually lean, with a low body-mass index and an aversion to eating carbohydrates and “sweets.” Because CSID is an inherited condition, patients with CSID often have close relatives who also experience chronic diarrhea. Any family connections?..a breath test can determine this illness. It tests for excess hydrogen .
The hydrogen breath test is a test that can aid in the diagnosis of sucrase deficiency. It uses the measurement of hydrogen gas in exhaled breath to diagnose gastrointestinal disorders. In the human gut, only a specific type of bacteria in the large intestine is capable of producing hydrogen gas. Ask your gastro what the best kind of probiotic would be?.. Genetic testing may be indicated in some cases. Sacrosidase is an oral medication containing the enzyme that does not work properly in people with this condition. By taking this medication, those with CSID can eat sucrose-containing foods because this enzyme will break down sucrose. This medication must be taken with each meal or snack. However, still do genetic testing to be sure you have it, it could be also something else going on as well. It is also suggested you find a specialist in this disease. Many disease advocacy organizations have medical advisory boards, physician locator services, or patient networks, all of which may help you find a healthcare professional who is familiar with a particular condition. You can search for a condition on this website to find related disease advocacy organizations. These would be located in the “Organizations” section. If you don’t find a specific group, search the Genetic Alliance and the National Organization for Rare Disorders (NORD) websites.
The following online resources can also help you find a genetics professional in your community:
The National Society of Genetic Counselors provides a database of genetics counseling services, searchable by location, name, institution, type of practice, or specialty.
The American College of Medical Genetics has a Genetics Clinics Database for individuals who wish to locate a U.S. genetics center.
The American Society of Human Genetics (ASHG) is a professional organization of researchers and clinical geneticists. The ASHG maintains a database of its members, some of whom live outside of the United States. Visit the ASHG site if you are interested in obtaining a list of the geneticists in your country, though some may be researchers only and may not offer medical care.
Look at the rare diseases info page online from NORD.
There are alot of other tests that can be done for gastro symptoms: swallow test, Gastroparesis, Pancreas evaluation and function testing. Also make sure nothing is going on with your kidneys, all tests normal, urine testing done for anything not normal. Did you get checked for H.Pylori, It can be very bothersome on some, and no symptoms in others. Stool Tests Can Help Diagnose:
Pancreatic insufficiency.
Fat malabsorption.
Bleeding in the digestive tract.
Certain infections.
Inflammatory bowel diseases
elastase
amounts of fat
Helicobacter pylori infection
Calprotectin
I would also talk to your OB/GYN doc about the issue of the hormones. It may be that you will do better taking a low dose BC pill to simulate pregnancy. Not sure if it will work, but it it does and it stops the attacks, worth a try. Hormones can effect so many things in our bodies and less research had been done on the female hormones then should be done by now, sadly It is a male dominated Health industry. If men had hot flashes we would have better treatments by now. I am also affected by hormones in whatever I am having going on, and of course no one has any idea. Twenty to 32 percent of women report moderate to severe symptoms that affect some aspect of life. Three to 8 percent report PMDD. The severity of symptoms can vary by individual and by month. For some women PMS can be quite severe, causing a slew of symptoms, including the ones you describe. The symptoms of PMS include:
abdominal bloating
abdominal pain
sore breasts
acne
food cravings, especially for sweets
constipation
diarrhea
headaches
sensitivity to light or sound
fatigue
irritability
changes in sleep patterns
anxiety
depression
sadness
emotional outbursts
Keeping a diary of your symptoms is another way to determine if you have PMS. Use a calendar to keep track of your symptoms and menstruation every month. If your symptoms start around the same time each month, PMS is a likely cause.
Severe PMS symptoms are rare. A small percentage of women who have severe symptoms have premenstrual dysphoric disorder (PMDD). PMDD affects between 3 and 8 percent of women. This is characterized in the new edition of the Diagnostic and Statistical Manual of Mental Disorders.
The symptoms of PMDD may include:
depression
thoughts of suicide
panic attacks
extreme anxiety
anger with severe mood swings
crying spells
a lack of interest in daily activities
insomnia
trouble thinking or focusing
binge eating
painful cramping
bloating
The symptoms of PMDD may occur due to changes in your estrogen and progesterone levels. A connection between low serotonin levels and PMDD also exists.
Just don’t stop looking, as there is an answer somewhere or something that may help your symptoms more. If your doc tells you there is nothing more he can do, it is time tom move on to another doc, and see other specialists as well.
For some for this there remains no answer but we can t stop searching and asking for help in our diagnosis.
There are a couple genetic illness called Porphyria and also periodic fever syndromes which may show up on genetic testing. Or you may show a variation that is as of yet not diagnose-able due to not enough research yet. , but it is something.
I spent alot of time with you as I totally understand your desperation after such a long time, much like myself. I had my gallbladder out and also my parathyroid and to no avail. I am still searching . A this point it looks to be Med fever, or FMF. Good Luck !!!
