3 years and no answers for my stomach issues. Please help me. Long, detailed post.
Posted , 8 users are following.
Hello, I am so very desperate. I'm sitting here in such agony and I feel hopeless. This is long, but I tried to be informative and detailed.
My problems began about 3 1/2 years ago. It started with having an unexplained upset stomach...but it kept getting worse and worse.
Symptoms:
-gnawing, burning, throbbing stomach
- intestinal cramping
- loose stools
- mucus in stool, often yellowish
- pain begins in early morning and lasts most of the day but gradually eases up by evening.
- Some mornings I can barely get ready for work and take care of my children because of the pain and constant trips to the bathroom
- weight loss (I lost 20lbs one summer and got down to 100lbs)
- no appetite
- tingling in fingers
- brain fog
- depression (usually very active and happy outside of an attack)
- fatigue/tiredness
- "attacks" last usually 2 or more weeks...with the worst one being 6 weeks long. I've been to the emergency room twice for extreme pain.
I had blood work about 3 years ago and my igA was very high. Initially the nurse practitioner (never got to see the doctor) said I had Celiac Disease. I ended up having to switch doctors due to insurance. The new doctor did a colonoscopy and endoscopy with biopsy. He said my results did not indicate inflammatory bowel disease or celiac. I've done stool samples testing for parasites and IBD, HIDA scan for gallbladder, x ray, ultrasounds, thyroid...all negative. Then I did a breath test and it came back positive for a rare disease called sucrase-isomaltase deficiency. Basically, it means I lack an enzyme needed to digest sugar. I was SO thankful. I started taking a medication called Sucraid (a liquid enzyme replacement you take with every meal). However, it's over a year later and I am STILL having attacks. I was always skpetical about the diagnosis because most cases are in children since it is a congenital disease. Why would it come about in my late 20s? My GI doctor says he believe that yes I have it...but that it must be IBS as well. I just did a breath test this weekend for SIBO so I will see what that comes back as. I'm also going to go in today and do more blood work to test for Celiac again since it has been so long since my last panel.
What I find peculiar is that when I was pregnant in 2019 I felt great. I didn't have any attacks. This makes me wonder if it could be related to hormones, specifically progesterone. The attacks came back after giving birth.
Has anyone had any experience related to this? Any thoughts or advice? I have a baby and a 4 year old and I just struggle so much daily when I'm in the midst of an attack. I feel so hopeless and depressed. On bad days I don't know how I can possibly go on like this and just want to die. No medicine tends to help. I've tried probiotics. I've tried lactase for dairy. I'm currently on Xifaxan, an antibiotic usually prescribed for SIBO. Last time I took it during an attack it seemed to help...but then I just started a new attack last week.
0 likes, 15 replies
HeathC bclw0228
Posted
I began having random stomach cramps, pains, a while back and have not gotten any answers yet either. But what I have found out by monitoring what I'm eating is that suddenly, for whatever crazy reason, I can no longer have corn tortillas, corn chips like Doritos, oddly Cheetos, or anything with Masa, like Tomales.
Sucks because my wife is Hispanic!! LOL
Pay close attention to whether it's happening an hour or so after eating.
bclw0228 HeathC
Posted
That is interesting. My symptoms dont start up right after eating. I will start an attack and the symptoms are constant for weeks with no relief.
Roritta9889 bclw0228
Posted
Also I have problems with my stomach I'm tired...It also started after delivery now almost 6 months and still..I have abdominal tenderness and bloating and also ribs pain.I went to almost 8 hospitals but all the doctors said I have nothing.
bclw0228 Roritta9889
Posted
You are not alone. Good luck, i hope you find some relief.
Panda2life bclw0228
Edited
you need to look into histamine intolerance/mast cell activation. all your symptoms, plus more including palpitation, dizziness and extreme headaches etc, I had for years. I tremors they diagnosed as dystonia, plus so much stomach pain I was unable to function. i read up on mast cell diseases by accident, it made a lot of sense. I had tried all sorts of diets to calm it down with limited success. then I went low histamine. it's hard work. and it isnt perfect. but my symptoms have improved maybe 80%. I can function somewhat now, if I'm careful with my food. I still have no appetite and episodes but its somewhat better, the episodes are once maybe twice a week instead of constant. a full spectrum digestive enzyme helped me significantly, plus high dose antihistamines when I feel an attack coming.
bclw0228 Panda2life
Posted
Thank you, i have added this to a list of things to talk to my doctor about. It's weird that i didnt have any of my attacks when i was pregnant, but i took zyrtec the entire time because i kept breaking out in random hives. I stopped the zyrtec after i had my baby.
yonder01 bclw0228
Edited
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 !!!
bclw0228 yonder01
Posted
Thank you. I was diagnosed with CSID and do take sucraid but i still have attacks. It seems like there is something else or that the diagnosis is incorrect. My results came back today for Celiac as a negative. My igA was 235.6. I am still waiting for my SIBO test results.
It just seems so odd to me that my symptoms are SEVERE in the morning until about 4pm. Today i just wanted to go to the ER so i could just be made comfortable. All i can do is curl up and cry. By the evening i am still uncomfortable and dont feel well, but I'm not in agony.
I have extreme tiredness and fatigue. I had to drive the other morning and could barely keep my eyes open.
It may also be worth mentioning that my cycles are irregular and i have occasionally broken out in random hives.
yonder01 bclw0228
Posted
There is another condition you can be tested for, it is called Mast cell disorder, and can include the hives.
MAST CELL ACTIVATION SYNDROMES
Mast Cell Mediator Symptoms
The myriad symptoms patients with mast cell diseases experience during mast cell activation can wreak havoc on patients on a daily basis, and multiple organ systems. These symptoms may appear as acute or as chronic conditions.
MAST CELL MEDIATOR SYMPTOMS
Anaphylaxis
Flushing of the face, neck, and chest
Itching, +/- rash
Hives, skin rashes
Angioedema (swelling)
Nasal itching and congestion
Wheezing and shortness of breath
Throat itching and swelling
Headache and/or brain fog, cognitive dysfunction, anxiety, depression
Diarrhea, nausea, vomiting, abdominal pain, bloating, gastroesophageal reflux disease (GERD)
Bone/muscle pain, osteosclerosis, osteopenia, osteoporosis
Light-headedness, syncope/fainting
Rapid heart rate, chest pain
Low blood pressure, high blood pressure at the start of a reaction, blood pressure instability
Uterine cramps or bleeding
I was tested for this and it was a simple blood test. Very easy.
I agree that if you are taking the med for SIBO, you should not still be having such severe attacks and something else is going on. I would also request from your doc medications to help you treat at home, be it pain medications, inflammatory meds , Nausea meds. But keep asking for more testing and I also highly recommend the genetic testing as well. Request phone or telemed appt with your doctors if they aren't taking in person appt, or you can t get there due to illness.
Keep us updated on your progress , also keep a record of your periods, their dates and how they relate to your symptoms each month, daily notes if you have to. Also the food diary. Talk to your doc about medications that will help with anxiety, but don't go right to anti depressants as they will try to force those on you and they can cause to many other issues. Plus they are hard to stop taking as well. Unless you have depression that is not normal.
stay away from them. Or you have been diagnosed with another kind of mental illness by a psychiatrist. Keep us updated on your progress and make those appt using telemed and phone conversations. ... 😃
mary19068 bclw0228
Posted
Hi bclw0228
Your symptoms brain fog, depression, fatigue, tingling fingers, no appetite may indicate low B12 or folic acid or vitamin D. Low levels of these vits can cause digestive problems. Ask your doctor to test you for all these vitamins and minerals such as magnesium. I had low vit 12 and vit D and suffered badly with my stomach. I also had low magnesium. I take all three now and my life has changed hugely... get them all checked just yo rule it out as a process of elimination. Vits and minerals play a huge part in our well being.You doctor must specifically order a vits and mineral test. They are not tested in a routine blood test. ...Best wishes....
bclw0228 mary19068
Posted
Thank you, i have added that to my list of things to check.
mary19068 bclw0228
Edited
Hi bclw0228
Your symptoms brain fog, depression, fatigue, tingling fingers, no appetite may indicate low B12 or folic acid or vitamin D. Low levels of these vits can cause digestive problems. Ask your doctor to test you for all these vitamins and minerals such as magnesium. I had low vit 12 and vit D and suffered badly with my stomach. I also had low magnesium. I take all three now and my life has changed hugely... get them all checked just yo rule it out as a process of elimination. Vits and minerals play a huge part in our well being.You doctor must specifically order a vits and mineral test. They are not tested in a routine blood test. ...Best wishes....
mary19068 bclw0228
Posted
Hi bclw0228
Your symptoms brain fog, depression, fatigue, tingling fingers, no appetite may indicate low B12 or folic acid or vitamin D. Low levels of these vits can cause digestive problems. Ask your doctor to test you for all these vitamins and minerals such as magnesium. I had low vit 12 and vit D and suffered badly with my stomach. I also had low magnesium. I take all three now and my life has changed hugely... get them all checked just yo rule it out as a process of elimination. Vits and minerals play a huge part in our well being.You doctor must specifically order a vits and mineral test. They are not tested in a routine blood test. ...Best wishes....
Courtney1110 bclw0228
Posted
Hi, I'm 25 years old and I have been having very similar stomach issues for almost 3 years now too. I have had pretty much every test as well, ruling out conditions such as IBD. I have been to multiple doctors and they either can't figure it out or say it is IBS. I have tried different diets and medications as well, but they don't work. I still want to see if there is something else going on, as I have lost about 20 pounds and my pancreatic enzymes, lipase and amylase have been tested multiple times and have been coming back as elevated. I hope you figure this out, as I am right there with you struggling with this!
bclw0228 Courtney1110
Posted
Im sorry to hear you are struggling as well. Just curious, are your cycles irregular? Mine have been irregular for years now and i wonder if that could be related to my problems. I am in the process of getting in with another doctor but nothing is ever easy. It requires a referral and even then the doctor doesnt have any appointments for a little while. Ugh. Not knowing when this suffering will ever end or at least be manageable is torture. i just cant live like this.
Courtney1110 bclw0228
Posted
No, my cycles have been pretty normal. My stomach issues do seem to be worse sometimes when I have my period though. When you have yours, do you have painful cramps? That could be causing your stomach issues and that's a symptom of Endometriosis. I know, it is frustrating when you have to wait longer to see the doctor, when all you want are answers. I hope this helps!