xcalibr January 26, 2016 at 11:15 am #13998
I’m hoping someone might have had similar issues so I’m reaching out for help. I’ll be as brief and as concise as I can. I’m 47, male, 6’1”, 260lbs and have never had any major medical issues, accept 2 kidney stones, one last year and one 25 years ago, nor have I ever been to the ER. This all started around Thanksgiving, which was the worst. After having eaten a large meal, of everything typical, by the time I was finished it felt like I had eaten 5x times as much. I was seriously bloated and in allot of abdominal discomfort all over, not ER pain per se, but seriously uncomfortable. Since then I’ve not been able to shake these symptoms, though they have been constantly changing. I started drinking only water in December and a few weeks ago I saw a Doctor. He ruled out dozens of things, including a hernia, and was puzzled as to why I was having these pains. He ran blood work and it was all good accept for a serious vitamin D deficiency. I do work on a computer all day but he thought this was more than just that lack of sun but he didn’t know what yet. The Celiac test has yet to come back. Besides the abdominal pain I basically don’t have any other symptoms and I don’t take any OTC or prescription medicine accept the new Vitamin D meds. My pain is localized to my lower left abdomen around the waistline and pelvic area sometimes. It feels like there’s something inside but the Doctor said he didn’t feel anything nor did the blood work detect any cancerous flags. The pain moves around too. Sometimes in the lower right abdomen. Sometimes these deep finger poking pains diagonally about 3” above my belly button, left & right. Sometimes these burning sensations at the very bottom/last rib in the front left & right and on both sides. Sometimes left & right flank pain, but no like kidney stones. Sometimes right pelvic pain. These pains all seem to come and go, but the lower left abdominal pain never seems to disappear. It’s worse when I’m sitting. Standing is decent and while sleeping I almost don’t feel anything. I have started a food journal because I ate allot of bread, pizza, bread crumbs & noodles one day and I got incredibly bloated again which made me think it might be gluten related. I started eating gluten free about 5 days ago and don’t seem to have any more bloating but I still have that constant lower left abdominal discomfort and the random other issues, which have lessened, but the lower left abdominal pain still haunts me constantly. It’s a dull ache more so than a sharp pain. My mother suffered from Diverticulitis, but the Doctor did not think that was the issue. Does this sound similar to anyone else’s experiences? Does it sound like a gluten sensitively? Celiac disease? Something else? IBS? I appreciate everyone’s patience, compassion, suggestions, questions & thoughts. Thank you.
skimpy January 28, 2016 at 4:19 pm #14012
I had a laundry list of aches and pains. I notice that food I eat will not bother my stomach only to irritate my small intestine 10-15 minutes after eating. I’ve cut out gluten, soy, dairy, much sugar. feeling better a year later. Oh also try a table spoon of mother’s vinegar around meal times. I think it has an enzyme that attacks yeast or something to that effect. Check out Wheat belly. Also leaky gut
skimpy January 28, 2016 at 4:44 pm #14014
I’ve been gluten free for a year. Soy and dairy for 6 months maybe. I do not take a probiotic right now. I’ve had trouble finding one that doesn’t irritate my stomach. My gluten free diet helped my stomach the next day. Cutting soy helped with neck and shoulder pain, dairy is a lower gut pain for me. I am 41 yrs old. 6’1″ tall male. Weighing 169 pounds this morning. Down from 225 a year ago. I’ve never been diagnosed. Dr. flubed the blood test. But proof is in the pudding. I was suffering from daily migraines and taking sumatriptans before. Its been quite the ride. Cook yourself some purple cabbage and onions with a little olive oil. Use himilayan sea salt for flavor
xcalibr January 29, 2016 at 5:24 pm #14016
Hi skimpy, I’ve been wondering if I’m also lactose intolerant. I had cereal with allot of milk yesterday and I was in allot of pain. I don’t normally have allot of dairy ever. Yeh, I’m just wondering how long it might take before the lower left dull aches would finally dissipate? 2-4 weeks? Or even longer? We just bought some sea salt too. Thanks!
wheatfreeeee February 3, 2016 at 1:16 am #14027
This does sound very similar to my symptoms. I was interested to read this as I am female with endometriosis causing pain the same area, so it’s been difficult to sort out.
My digestive pains started years ago. I initially had stabbing pains on either side of the bellybutton, and a feeling of “blockage” somewhere in my left abdomen. I bloated after every meal, even just a carrot.
Eventually I had diarrhea alternating with constipation, then constant left pelvic pains in my lower belly. I was not yet diagnosed.
I had endometriosis surgery, but my left side pain and gastro symptoms got worse. I had constant lower left quadrant pain-sometimes dull, sometimes sharp. After meals it began to feel like I was digesting gravel or brillo pads. Sleeping was the only time I wasn’t in pain.
I had a colonoscopy to check for diverticulitis, all was clear. It took 3 more years to find celiac. By that time complications and deficiencies had set in.
The lower left pain has been a constant symptom. My suspicion is it is damage to the small intestine. With celiac you can get pains all over the place at all sorts of times, and digestive pain has a way of radiating, but yes, the lower left pain never stops for me. I’ve only been gf for 9 months.
Definitely learn all you can about proper testing and non-cross-contamination gluten free. I found good info through Beth Israel Deaconness Celiac Center’s book.
Another test that might be helpful is lactose intolerance. I had to get a fasting blood test, then drink a lactose solution, then get a few follow-up blood tests every half hour to see if I was absorbing the lactose sugar. I wasn’t, and that proved lactose intolerance. BUT, I already knew that before the results came in because the lactose solution gave me immediate food-poisoning symptoms. Not pleasant but it was first-hand proof, plus it helped me understand how immediately painful gastrointestinal irritation is.
Plenty of gastroenterologists are too happy to call it IBS and leave it at that. But if you have gastro pain, SOMETHING must be triggering it and logically, you can find that out through testing and process of elimination.
- This reply was modified 4 years, 6 months ago by wheatfreeeee. Reason: Edit: typo
xcalibr February 3, 2016 at 4:25 pm #14032
Wow, I’m still waiting on my Celiac test. I’m not hoping that’s the problem, but then again, I kinda am. Ya know? I need a diagnosis so I can start focusing on recovery and what exactly I need to be doing. Yeh, I think I’ve been cross-contaiming myself often too and I need to stop. I wasn’t aware there was an exact test for lactose. Who performs this, a PCP/GP? So your lower left pain has never gone away even after 9 months of being GF free? Wow. Can these pains be the same whether it’s Celiac Disease or Non-celiac gluten sensitivity (NCGS)? Your symptoms do sound incredibly exactly like mine. Thanks for sharing!
wheatfreeeee February 3, 2016 at 9:24 pm #14033
Glad it helps!
My endocrinologist ordered the lactose test, and I had it done at a lab. I imagine most doctors could order it.
In terms of recovery, it varies by how well you adhere to the diet and whether you have complications like other autoimmune diseases, deficiencies, other food intolerances, SIBO, etc.
Don’t worry, there are plenty of people who see immediate improvement with gf. Usually the rule of thumb is it takes 6 mos for the gut to heal. One of the things I like about the Beth Israel Deaconess info is that they go through what the next steps are if a patient is not improving. Often it comes down to cross contamination, but there are other possibilities to rule out methodically.
I was really sick by the time I was diagnosed, and I am much better now. My vitamin levels are better, and my hormones are too.
But I still think my gut is irritated. I was getting cross-contaminated with lactose, and that was a problem. It could also be that I lack enough good bacteria, or that I have other sensitivities, or the endo is inflamed. Also stress makes your gut spasm and makes pain worse.
You may want an endoscopy with biopsies. I didn’t have it and I wish I had when I was at my worst, so I could have a better understanding.
I don’t really know much about NCGS, but I imagine it could cause similar pains.
When I finally got diagnosed it was a relief! It’s actually kind of freeing, in a way, because temptation and willpower aren’t factors, your body makes the choice for you. It’s a big change, but you can adapt!
To be honest, the best, most calming diet for me is a very plain one: organic produce, organic farmer’s market meats, eggs, nuts from dedicated equipment, olive oil, no added sugar. I’m very sensitive to even gf processed foods and things like corn and soy. I’m looking into an elimination diet and think that will help a lot with the residual pain.
Hope everything works out for you!
xcalibr February 4, 2016 at 8:57 am #14045
Ok, I’ll have to ask my Doc about the lactose test because I have started drinking Almond Milk because regular milk seemed to be bothering me, but cheese doesn’t seem to, it’s weird. Is that possible? I figured that the cross contamination was going to be big in the healing process. Yeh, I noticed that on the Beth Israel Deaconess website, thank you for the reference. Some articles report that NCGS can sometimes cause worse pains than CD but I honestly have no idea. I can say that a diagnosis will make me feel so much better too, I just want to know. Thanks again for all your help & advice!
skimpy February 4, 2016 at 2:35 pm #14064
No dairy at all for me. Cheese is so good. I had enchiladas without cheese last night. Not the same LoL. Seriously though before eliminating dairy totally from my diet I found cheese to be less painful to my gut than milk. I can imagine its because its a solid.(somewhat LoL) I am currently in search of dairy free cheese.
xcalibr February 6, 2016 at 11:32 am #14069
UPDATE: I got my Celiac Disease (CD) tests back and they were all negative which comforts me and also kind of confuses me more. They ran several Celiac tests and are mailing me all the paperwork. Next visit is with the Gastroenterologist at the beginning of March. I kind of feel so discouraged that I don’t have a diagnosis yet but relieved and selfish at the same time.
Ironically a few days ago I ran into an old friend/colleague of mine and she has Non-celiac gluten sensitivity (NCGS) and had the exact same symptoms as me, which was a ray of hope that this might be the issue, but I’ve still not been “officially” diagnosed.
Eliminating the gluten from my diet has helped in eliminating almost all of my bloating and most of the other random pains too, but this lower left abdominal dull ache is still bothering me. My friend/colleague expressed that her aches in that location took several months to eventually feel better.
I think I’ve also noticed that dairy and a few other of the cross-reactive foods do actually bother me and I will be needing to cut them out till I heal as well.
My friend/colleague thought that after a month, at which point my GI Doc appointment will be, that I should notice some sort of pain difference in my lower left abdomen as long as I don’t get cross-contaminated by accident if I am actually suffering from NCGS.
Since I still seem to exhibit some occasionally bloating, gas, diarrhea, constipation and my lower left dull ache but nothing else still makes me wonder. No fever. No blood in stool. No acute pain. No vomiting. No nausea. No shortness of breath. No loss of appetite. No headaches. Not tired. Don’t drink nor smoke. And when I sleep on my back the dull ache seems to vanish. And the PCP ruled out other organ issues that they normally check for.
Hoping the GI Doc will do an ultrasound or sonogram, upper GI, endoscopy or colonoscopy or whatever, but I’m confused because if I don’t have CD isn’t it true that none of these tests will detect NCGS?
After taking my wife to the ER recently for what she thought was a heart attack which was, thankfully, only a hiatal hernia, that has left us with over a 10k hospital bill. Not sure how much insurance will cover yet and our money tree burned down years ago.
So disappointed that there’s still no test for NCGS.
My aches all seemed to have reached a pinnacle within a week or less last Thanksgiving. Is that how fast everyone else’s symptoms manifested as well? Thank you.
skimpy February 10, 2016 at 12:27 pm #14111
Congrats you’ve got the same thing I got. We think. LoL Treatable via correct food consumption. For lunch I had fritos and smoked oysters. Not the best probably but within my nutritional guidelines(LoL) I take a table spoon of bragg’s apple cider vinegar and a little bit of bit(or alot)of honey. really settles my stomach.
xcalibr February 10, 2016 at 2:51 pm #14112
I’m still keeping my GI appointment, I suppose, but the only other thing it could be would be diverticulitis, which I really don’t think it is. That seems to have more extreme symptoms than CD and NCGS than I have ever had. I’m keeping with GF because I believe I do have NCGS and because it stopped my bloating but my lower left pain is still there, but, I guess, it could take months to fully heal before I don’t feel anything anymore. The GI won’t even be able to diagnosis NCGS which is sad. Yeh, I find if you just stay as natural to foods as you can then you’re eating GF, but damn, if there’s not a ton of things I’ll never be able to eat again. I still wonder if fasting affected my CD results. Not only did I fast but I have no idea what I actually had eaten those days prior to the blood tests. I’ve heard of people getting negative results and getting tested again to only have it be positive. Wow.
skimpy February 10, 2016 at 3:42 pm #14113
I got my 3 year old son tested for CD and he was negative. I worry about him. Me I’m ok and feel confident that I only have NCGS. I lived unknowingly with this until a year ago. Crazy how much better I feel now. I figure I probably have to get checked for pollaps this year. I’m dragging my tail around a little about that.
wheatfreeeee February 11, 2016 at 11:14 pm #14114
Are you wondering if you weren’t on enough of a gluten challenge prior to the test?
Yeah. NCGS is kind of a no-man’s land now in some ways.
You may want to look into SIBO, which can cause bloating especially with carbohydrates, and FODMAPS. I’m trying to figure that out now because that’s been flaring for me. There isn’t a ton of medical guidance for this, there is some breath test for SIBO, and pathogen tests for stool, but a lot of it comes down to elimination diets.
To be honest, it still requires a great deal of strictness. I had to cut white sugar 100% and wish I had done it sooner. And much less fruit. And very few grains, no soy, no corn, lots of leafy greens. Prebiotics and probiotics help.
I hope the diverticulitis is negative!
Did you just have the antibody test and you’re going to get the biopsy? You may wish to get an endoscopy with biopsy anyway, that could show celiac or something else like Chrohn’s.
Sometimes celiac diagnosis requires some interpretation. There’s a good blog called the Patient Celiac, and she has a couple entries about the limitations of testing. There’s one entry called Celiac Pathology that you might find interesting. It talks about other possible diseases too.
I’m a little uneducated about where the NCGS discussion is these days, but I personally do wonder if at least a portion of NCGS people are latent or early celiac.
At the very least a good elimination diet should help you find some relief. It takes several months for the gut to heal, and it can be retriggered easily, but if you can identify foods that trigger it that’s helpful.
One other thought, how is your stomach acid? Low acid can contribute to bloating, slow digestion, heaviness.
I’m sorry I’m a little scattered tonight. I hope you get progress!
xcalibr February 15, 2016 at 11:03 am #14125
Thank you. I will have to look into SIBO. I finally got a copy of the CD tests, but I honestly decipher anything on them. LOL I will also check out the Patient Celiac forum. Experimentation & elimination of certain foods is going to be long and probably sometimes unpleasant but it’s a necessary evil, you are correct. Thank you so much.
brendaotParticipantbrendaot February 24, 2016 at 5:26 pm #14188
Hi xcalibr. I hope by now you have some answers, but if not —
I was diagnosed with IBS 10 yrs ago and managed it very well with low Fodmap diet. Very similar to Wheatfreee’s diet. But in 2013 I started to have the gas, left GI pain, and severe diarrhea. Lost 20lbs in 2 months. Had a horrible GI doc who made me wait 6 months for a colonoscopy, said it was IBD, gave me two meds that made it WAY worse… While telling me the whole time that diet made no difference. A few months later I was rushed to ER with infection ravishing my GI tract and sepsis setting in. I was told **I** should have paid more attention to the left side pain!!! I was only on the phone with the doc or her nurse once a week and was always ignored!
So. I would highly recommend an ultrasound or CT Scan asap. The colonoscopy with cleanse was too harsh for me and is thought to be the cause of the infection. I lost 8″ of lower bowel and am very diet /gluten strict now. It is not worth the risk. I hope you have a good relationship with your doc and find both answers and relief. Best of Luck!
wheatfreeeee February 28, 2016 at 10:38 pm #14216
Thanks so much for posting this Brendaot. I’m sorry you had to go through this. Your story has been on my mind a lot. I’m grateful you shared this.
I think you’re right infection or bacterial overgrowth can be a huge cause of this left side pain. Mine is surging again because I think I ate too many carbs. It gets imbalances SO easily. My doctor has exhausted his dietary advice so I’m going to have to take it in my hands and do my own diet and get a better GI. My past GI didn’t even mention xrays or CT scans, geez.
I think fecal implants have a real potential use here. My doctor laughed it off but I think he’s wrong.
lcgrahamParticipantlcgraham June 9, 2017 at 4:45 pm #16393
After eating all of that gluten filled meals, you could theoretically get the blood work done for CD and come up with some type of results.
For the Gluten Sensitive Enteropathy (GSE) which has a negative blood result, an HLA-DQ2 and HLA-DQ8 blood test would be of help as the DQ2 is found in 95% of people with CD, but is also found in 20-30% of people without CD
TimParticipantTim December 28, 2019 at 1:15 pm #18052
I know this post is a little old but I have almost identical symptoms, but pain in the right lower abdomen that is worse with sitting and it does move around to the other side and does get worse it seems after eating gluten. I’m just curious what seemed to help you?
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