Our GI Reactions
People with Alpha-gal Syndrome Describe Their GI Reactions to Alpha-gal
As you read these, keep in mind that some people with alpha-gal syndrome have other conditions as well. Not all your symptoms can necessarily be attributed AGS. Keep an open mind, and seek a physician’s advice!
However, if your symptoms go away or dramatically improve after you adopt an appropriate avoidance diet, that’s a good clue that you are on the right track.
I first started having symptoms back in early 2006. This was about the time I started newly being an outdoorsy type person. I had been doing a lot of backpacking in the Mark Twain National Forest in Missouri.
After a few camping trips, I had the first symptoms. The symptoms were chest pains. After an ER trip for chest pains in 2007, I was diagnosed with GERD and put on Nexium Daily. This was after a full cardiac workup came back negative. For several more years I would wind up in ER’s with horrible chest pain, and received a plethora of cardiac workups including echocardiograms, stress tests, and again they would find nothing. They diagnosed me with GERD and anxiety.
In 2013, in yet another trip to the ER with chest pains, they did an ultrasound of my gallbladder and saw stones. They then supposed the cause of the chest pains might be gallbladder disease. I had that removed.
The problem continued to get worse. Symptoms now included pain across my abdomen, cramping, pain down my arm, and pain in my neck when these attacks would happen. I had also developed extreme urgency when having BM’s and was going multiple times in one day often in rapid succession. My life seemed to revolve around where was the closest bathroom and when would the mysterious chest pain return. Would I finally have that heart attack and die?
After yet another ER episode, I got a CT-Scan to rule out an aortic dissection and cysts were found in my kidneys. So then I was told it might be because I had cysts in my kidneys that I had so much abdominal pain. Especially the near permanent left flank pain I had. I was sent to a urologist and got ultrasounds where they found many cysts and sent me out for genetic testing for polycystic Kidney disease, which came back negative.
Many more dozens of trips to the ER, general practitioner, and GI doc followed. I had endoscopies, colonoscopies, SIBO testing, full endocrine and metabolic workups. I was eventually diagnosed with IBS-D, due to the constant explosive bathroom trips after these episodes.
After almost filing for disability at a desperation meeting with my GI, offhandly she suggested testing for alpha-gal syndrome, after hearing about it from Dr. Commins. Sure enough, BINGO. I was positive. All of my symptoms were GI related.
After getting the diagnosis, in hindsight, I could see the pattern. I mostly ate meat at dinner. About 5-6pm every day. And the episodes almost always started between 10 and midnight or slightly later. I would have severe chest pains, intestinal cramps. Often the chest pain would radiate out to my arms or neck, mimicking heart attack symptoms. I had no idea at first the time the intestinal cramps were cramps. I thought they were my heart skipping around. Reinforcing my fear I was having heart issues. Then the next day would have frequent trips to the restroom with very loose foul-smelling stools.
I never had any hives, rashes, low blood pressure or typical anaphylaxis reactions. Once I stopped eating red meat and dairy my symptoms mostly stopped. I am now of the firm belief after my ordeal that any case of IBS should almost automatically have an alpha-gal IGE test ordered to rule that out. It would have saved me a lot of grief!
As our understanding of AGS continues to grow, I thought it might be useful to share an experience of mine. I lived with AGS for a long time before I had even heard of it, and during that time I had almost every test imaginable to try to determine what was wrong. I had stool analysis that showed very high levels of fecal calprotectin, which indicates intestinal inflammation and is used to diagnose IBD (inflammatory bowel disease). Due to my high levels, the GI doctors thought I had Crohn’s but after a colonoscopy, they concluded I did not and dismissed me with the belief that the calprotectin results were just an anomaly and nothing was wrong. After finally learning of and being diagnosed with AGS, I now seem to have an explanation for the elevated calprotectin. Hopefully this information will be useful for doctors and patients in other cases where unexplained diagnoses of IBD occur.
Over 5 years of doc and gastro visits. Diagnoses of IBS, gastroparesis, lymphocytic colitis and so on. Saw new gastro and she saw me constantly scratching my head and hands at the consult. She ordered the test that day and referred me to Dr. Commins when positive result was received.
Starting when I was sixteen, I had severe pain in my stomach, felt like a ball of spikes in my diaphragm. I would cry from it. Severe diarrhea. Had a colonoscopy in early 20s. Diagnosed with IBS. Also, had cystic acne.
Got diagnosed at age 30. GI symptoms left immediately. Skin cleared up three weeks later. Now I’ve been clear for six years.
I react gastrointestinally only. When I have reactions, the pain starts under my ribs, comes in waves, ten times worse than labor pain, and I get horrible chills and back aches from the pain and shivering. It’s awful. My last reaction in April landed me in the hospital and they gave me pain meds instead of an epi.
It was always the upper abdomen, to the right side. It felt like a constant burning. It would last for a couple of hours, and there was nothing I could do to alleviate the pain. I had diarrhea every day. I was tested for gallbladder issues, pancreatitis, leukemia, everything except alpha-gal syndrome. I and was eventually diagnosed w IBS. I lost 25 lbs over a period of 6 months and didn’t need to. It took 10 yrs for an accurate diagnosis.
I have been symptom-free for 2 years since I eliminated all mammal meat, dairy, and anything else that might have a slight hint of any kind of mammal byproduct.
Abdominal cramps for hours, threw up sometimes, and four to five days of constipation, followed by uncontrollable diarrhea. Yep, I suffered that for three years. Three years of ultrasound, X-ray and MiraLAX double dose every day. Three years of toxic hell.
My GI doctor got bit by the tick and got it too. Only then did she call me in for the test.
My daughter who was diagnosed at 11, had stomach aches and nausea 3-6 hours after eating for months before she was diagnosed. She was only tested because my husband and youngest had just recently been diagnosed and we were able to tie all of it together.
Was a toss up between using the toilet to throw up in or other reasons. Severe abdominal pains. The pain was so bad that I would get HOT like I was going to explode just from the pain. Would lay on the cold tile floor for relief. Would cause blood pressure to drop suddenly and almost fatally. Had exploratory surgery to try to determine the cause. Nothing. Couldn’t tell if it was diarrhea or just plain water at times.
NEVER any hives or tongue swelling, short of breath. Just a queasy feeling in my stomach and need to use the toilet.
Absolutely the worst stomach pain and nausea. All I can do is lay down until it decides to go away.
Waking up in the middle of the night with what felt like endometriosis so severe I couldn’t call for help if I wanted to (no, it wasn’t endometriosis at all – my GYN confirmed), heart pounding, and nausea. No diarrhea or other intestinal symptoms. Otherwise, I had daily migraines. All of this went on for years due to dairy consumption. Then, periodic rash, hives, swelling from eating meat, which I rarely ate due to mostly vegetarian diet anyway. I thought I had an allergy to smoked foods, since I had pollen allergies.
I was always googling in the middle of the night when the symptoms eased up and couldn’t find any answers.
Worse than labor pains!!!
Severe stomach cramps and pain. Often diarrhea, sometimes vomiting. Typically 3 hours after eating.
Terrible upper abdominal pain that felt like gas but never came out
My symptoms hit me three-to-four hours after ingesting mammal products:
1. Intense itching, only on the palms of my hands & the bottom of my feet.
2. GI issues: excruciating abdominal bloating, cramping, and pain, followed by diarrhea and vomiting.
My original symptoms were abdominal pain, gut pain,diarrhea, and dizziness. Then they progressed to hives, migraines and dizziness.
My son gets sick for three-to-four days with abdominal cramps, vomiting, and diarrhea. The only other symptoms he has had are headaches and shortness of breath, but they weren’t as noticeable. We just associated them with other stuff.
I had all sorts of test done. Gall bladder, ulcer. After the stomach pain it progressed to hives, then from hives projectile vomiting.
My symptoms started 4 years ago. Heart racing, low blood pressure, severe abdominal cramps, my face sometimes flushes but not always, runny nose, so very tired all the time even after a full nights sleep, severe bloating. I was diagnosed with panic attacks. Went a week with no food at all. FINALLY, I got referred to a GI doctor, they gave me the alpha gal diagnosis. It’s been 2 weeks since my diagnosis. I feel tons better!
I had only GI symptoms from 2002- 2013. I would have severe, upper right quadrant pain, focused in the front, but it would radiate to my back sometimes. I also didn’t have a solid stool for over ten years, but was negative for Crohns or IBS. I also would have severe abdominal bloating and stabbing pain.
I also suffered from multiple duodenal ulcers for years. I took carafate which helped my symptoms but never fully took care of the ulcers. I was negative for H Pylori so the doctors were stumped.
I had my gallbladder out because of my “GI symptoms”.
Once I removed mammal from my diet, all symptoms went away, including the right upper quadrant pain that the removal of my gallbladder did not resolve.
For many years I had a strong, raw pain in my stomach for 3 days after I consumed any beef product, along with a migraine that would not subside with any medication. I had no idea it was alpha-gal syndrome, but as the years progressed, so did the pain and symptoms. Extreme GI issues followed and became more frequent. I thought it was food poisoning until it became too frequent to be so.
It took me a while to figure out what was happening—especially since AG wasn’t as commonly talked about 16/17 years ago. I spent years losing weight and having symptoms blamed on severe IBS. Attacks would come with panic attacks and rapid pulse/breathing, but I never went into anaphylaxis. Initially, it took a couple of hours for me to have symptoms, but it progressed to instantaneously. One of the first times, I thought I had a very bad stomach bug. Just as I started feeling better, I made myself some vegetable soup and was violently ill again. I realized later that the soup had beef stock in it. I have to be very careful, but now that I know, it’s manageable. Cross contamination will put me out for a day or two.
Mine was stomach cramps and continuous diarrhea and nausea. I was living off crackers and applesauce, because I couldn’t eat. It was like having the stomach bug 24/7, I lost 70lbs in six months, until they figured out it was alpha-gal syndrome. I also had brain fog and anxiety that stopped after my diagnosis and change of eating.
Mine was only stomach and GI issues for 20 years. It still sent me to ER. Had so many tests. Than something changed and I finally saw hives and other symptoms. I finally googled enough times to find the diagnosis. My doctor made me feel like I was crazy for asking about it. So much money spent on tests.
I was being treated with $1,800 worth of Crohn’s medication a month before my AG diagnosis. I had horrible GI issues. Vomiting. Chronic diarrhea. Nausea. There were days i could not leave the house.
Mine starts with a feeling of major panic and nausea, then the diaphragmatic spasms, then hot/cold sweat and feel like I’m going to pass out or die, then the violent diarrhea begins. After the diarrhea ends, I have chills that feel like I can never get warm enough, at times there is dizziness and a feeling like my head is going to explode. I’ve lost 40 lbs in 9 months.
My husband had a right hemicolectomy gallbladder and appendix removed 2 months prior to ag dx. They tried 5 different antibiotics on him because he kept having a very high wbc count of 20000. They finally found one that he could tolerate but it also raised his temp to 102. The tapes and bandages broke his skin out. This surgery was unnecessary as his gallbladder was fine and his appendix. He did have a polyp in his cecum that needed to be removed but the surgeon was 100 percent sure that his gallbladder was causing his stomach pain and malabsorption. When all in all it was probably AGS.
I get GI stuff AND hives. And what prompted the diagnosis was full anaphylaxis.
Terrible upper stomach pain, bloating, diarrhea constantly, reflux.
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