Still Abnormal Fat Malabsorption After 13 Months

[greenbeanie]

A qualitative fecal fat test just confirmed that I still have significant malabsorption. I've been strictly gluten free for 13 months. I feel like I'm digesting things much better than at any other time in the last ten years, and after a few months gluten free my stools started sinking most of the time. But the continued sticky stools do worry me because this test was positive when I'd only been eating about 15-20g of fat per day. My heart races for several hours after meals with even just a tablespoon or two of olive oil, a few bites of avocado, or a couple slices of cheese. Apparently some doctors recommend eating around 100g of fat per day before this test, so the fact that one random stool sample showed malabsorption even when I was eating way less is worrisome. If I eat nothing but raw or steamed veggies and plain rice, I'm totally fine (but crave protein and oils).

I am having an abdominal MRI next week, and I left a message requesting the fecal elastase and vitamin K tests but I don't know if my GI will agree to order them. I strongly suspect that I have exocrine pancreatic insufficiency, and in that case it would hopefully resolve with more years gluten free and some time on prescription-strength enzymes. I know that pancreatic problems are common from long-undiagnosed celiac, and I still do suspect that my celiac tests were false negatives because I'd been gluten-light for so long. If I knew I had celiac, I certainly wouldn't expect 20+ years of problems to be gone after a single year gluten-free. But my doctors are adamant that neither NCGS (even if severe) nor wheat allergy would still have any residual effects after this long, and they do not think whatever is causing my malabsorption now has anything to do with gluten. That strikes me as unlikely, given that virtually every other health problem I've ever had is well on its way to healing now that I'm gluten free, but I also don't want to ignore other problems that could be unrelated.

I guess my questions are:

1) Has anyone with long-standing malabsorption at the time of a celiac diagnosis still had this much fat malabsorption a year later? How long does it take to resolve?

2) Has anyone with severe NCGS but not celiac had damage to their pancreas? Are my doctors right that NCGS can cause many of the same symptoms as celiac but does not actually cause clinically-significant malabsorption or damage? I can't seem to find any relevant literature on this.

[BlessedMommy]

I'm sorry that you're still having issues, that has got to be hard!

 

As far as the diagnosis stuff, I think that you are most likely celiac. You have a daughter with celiac and you have severe symptoms when you consume gluten. 15 years of being gluten light is a long time and I'm guessing that the gluten challenge probably wasn't long enough and that the celiac tests were false negatives.

 

It is probably wise though to rule out any other issues, so it doesn't hurt to keep on looking at other possibilities.

[dilettantesteph]

Are you taking digestive enzymes and still have fat malabsorption?  Will your doctor not give you a prescription for them?  You could try over the counter.  What are you doing for protein nutritional needs?  What about vitamin B12?  I don't think that the doctors can know what they say they know about NCGS.  There has been little study.

[greenbeanie]

I have tried over the counter enzymes and they made me feel worse at first, but after that they seemed to help a little (not enough to make a big difference, though). My doctor won't give me a prescription unless tests first show that it's needed. I have been taking probiotics for about 18 months and magnesium supplements for over a year. The magnesium makes a huge difference. At various times in the past I was found to have magnesium and potassium deficiencies, and low cholesterol (low in the good kind too), but they did not run the fecal fat test before and really did not seem to believe the diarrhea and sticky stools were as bad as I'd said it was.

I've taken B-complex on and off for years, and started alternating with sublingual B12 a few months ago. Although I have a documented 20-year history of chronic diarrhea, no doctor would ever agree to do systematic testing of other vitamins. They were convinced it was all in my head and just said to take a multi-vitamin and stop worrying about it. My B12 was checked last year and was in the low-normal range with the supplements, so that seems fine as long as I keep it up. The GI refused to test me for other fat-soluble vitamins once my celiac tests came back negative last year. Fortunately, I did just get word that she's agreed to order the vitamin K and fecal elastase tests now.

I get quite a bit of protein from skinless chicken, almond meal, coconut flour, sunbutter, and sometimes other meats. Though I don't feel great after eating these things, I know I need the protein and don't seem to have as much trouble with those protein sources as I do with fattier meats, nuts roasted in oil, or dairy. My lactose intolerance did pretty much go away after about 10 months gluten free, and it was great to be able to eat some dairy again without gas for the first time since I was a teenager, so I took this as another sign that my digestion is still slowly improving. It now seems to be just the fat content of some dairy products, not the lactose, that is bothers me. I wish they'd run this stool test years ago so that doctors would have taken me seriously before, since this test result seems to be the one that got my GI to take notice.

[powerofpositivethinking]

Hi greenbeanie!

 

I'm glad your doctor is starting to take notice!  If Vitamin K comes back abnormal, I would see if you can get Vitamins A, D and E checked as well.  I was bruising easily, and thought I was anemic, but instead it was vitamin K deficiency.  Despite massive supplementation, my vitamin K was not climbing, which prompted the doctor to test for fat malabsorption.  It came back that I was malabsorbing neutral and total fats.  I realize that total fats are linked to the small intestine, but neutral is a problem with the pancreas or gallbladder.  I then had the fecal elastase testing done which came back that I have severe pancreatic insufficiency.  To make sure everything else was ok, the doctor ordered a small bowel follow through, MRIs of my pelvis and abdomen and the capsule endoscopy.  Everything came back normal, so he agreed that my EPI is due to celiac disease.  I am a little overweight so I do not fit the stereotype of unexplained weight loss, but I am usually bloated, but that seems to be getting better.  Currently I'm prescribed 24,000 lipase Creon capsules.  I take two with each meal and one with a snack.  

 

I've had low potassium, but my magnesium has never tested low, however I feel so much better when I supplement with it!  I've read that only one percent of magnesium circulates in your blood, so even if your blood levels are normal, if you're showing symptoms, you should supplement.  My main indicator is when I lay down in bed at night and start to twitch.  I also read that when you malabsorb fat, the undigested fat pulls the magnesium out of your body.  

 

I also have low cholesterol, and the last time I had it tested, I was eating 100 grams of fat a day, so there should have been absolutely no reason for that.  Only my LDL is low, and my HDL is normal.  

 

At first the doctor told me to eat a high fat diet while on the enzymes, but I realized I just felt worse, so now I try to eat about 50 grams of fat per day.  When eating gluten, I used to bloat from my stomach the whole way down, but now I usually bloat in the lower intestinal portion, and from my reading that's because the fat is passing through my body undigested.  I also keep my fiber low since I've read that you should for fat malabsorption, and I feel better when I do because it cuts down the bloat.

 

I'm not sure how much the enzymes are helping.  TMI-my stool doesn't stick to the bowl very frequently anymore, but I have to wipe several times if you catch my drift   I think I may need a higher dose, but I have about another two months until I get the fat malabsorption and fecal elastase testing run again.  This is definitely a process, but I just have to keep doing what I'm doing and hope that everything resolves itself.  On the days, I don't feel bloated, it's a fantastic feeling.  Is it too much to ask to have that feeling each day 

 

 

I have tried over the counter enzymes and they made me feel worse at first, but after that they seemed to help a little (not enough to make a big difference, though). My doctor won't give me a prescription unless tests first show that it's needed. I have been taking probiotics for about 18 months and magnesium supplements for over a year. The magnesium makes a huge difference. At various times in the past I was found to have magnesium and potassium deficiencies, and low cholesterol (low in the good kind too), but they did not run the fecal fat test before and really did not seem to believe the diarrhea and sticky stools were as bad as I'd said it was.

I've taken B-complex on and off for years, and started alternating with sublingual B12 a few months ago. Although I have a documented 20-year history of chronic diarrhea, no doctor would ever agree to do systematic testing of other vitamins. They were convinced it was all in my head and just said to take a multi-vitamin and stop worrying about it. My B12 was checked last year and was in the low-normal range with the supplements, so that seems fine as long as I keep it up. The GI refused to test me for other fat-soluble vitamins once my celiac tests came back negative last year. Fortunately, I did just get word that she's agreed to order the vitamin K and fecal elastase tests now.

I get quite a bit of protein from skinless chicken, almond meal, coconut flour, sunbutter, and sometimes other meats. Though I don't feel great after eating these things, I know I need the protein and don't seem to have as much trouble with those protein sources as I do with fattier meats, nuts roasted in oil, or dairy. My lactose intolerance did pretty much go away after about 10 months gluten free, and it was great to be able to eat some dairy again without gas for the first time since I was a teenager, so I took this as another sign that my digestion is still slowly improving. It now seems to be just the fat content of some dairy products, not the lactose, that is bothers me. I wish they'd run this stool test years ago so that doctors would have taken me seriously before, since this test result seems to be the one that got my GI to take notice.

[1desperateladysaved]

Is your gallbladder intact and healthy?  It helps to metabolize fat.  There is a link between gallbladder disease and celiac.  I have been reading that if one has celiac they should be checked.  If you already had it out, you may need to take a supplement to help digest fat.  I have heard of it, but I don't know what it is.  I am dealing with gallbladder, so have been reading up on it.  Many people notice no difference without the supplement.  I am trying to keep my gallbladder if I can.

 

Once the villi in the small intestine are healed (according to my nurse) digestive enzymes are not needed to help break down the food anymore.  Your body is set up for it!  One can be tested for pancreatic insufficiency to see if enzymes are needed.  I have had this done by stool test for certain.  Another time I had blood/urine tests that showed a need for enzymes.  If you need the supplement, you will likely feel improvement.  I recently found I didn't need them anymore, so I am cutting back.  IT is hard after something helped so much to realize that one doesn't need it anymore!

 

I have had some undigested fat coming through.  You may need to watch for foods that you don't tolerate.  You may need to test fructose or dairy intolerance.  I messed myself up by drinking coconut water.  It has fructose.  I drank a bunch preparing for colonoscopy and ended up with diarrhea before prep started!  The point being watch the foods you are eating, don't go overboard on anything, and see if you can make a difference.  After my colonoscopy I cut back down on coconut water and saw improvements in fat metabolism.

 

Dee

[greenbeanie]

Thanks so much, powerofpositivethinking! Reading your postings about this on other threads was tremendously helpful and was how I knew to request the elastase test. Now I just need to wait for more results to come back...patience is hard! I do hope to get other vitamin tests done at some point, especially A and E. My D was at the lower end of normal last year and rose after a few months of supplements, so I think that one's ok. My PCP referred me to a nutritionist too, so maybe I can get her to do more systematic vitamin testing. I'm glad things seems to be improving for you and hope you're able to find the right Creon dosage soon.

I have the twitchy-when-lying-down thing too. Dee gave me the magnesium tip last year, which helped with that and the internal shaking feeling. It's funny in retrospect - I had a sleep study done once, and in the pre-screening they asked me if I ever had those twitching jerks when you feel like you're falling. The nurses looked incredulously at each other when I said I had them multiple times per week, and sometimes multiple times per day. Apparently that only happens to most people a few times per year! (Most of my muscle twitches are not that big, though.)

[dilettantesteph]

I thought you were eating only steamed veggies and rice.  Now I see you said "if" that's all you eat you are fine.  Could it be that elsewhere in your diet there is some cc?  How about going back to the steamed veggies and rice and add things one at a time to see what it might be?  It could be gluten cc that is giving you the malabsorption problems.

[greenbeanie]

Thanks for the suggestion, but I can't imagine how I'd be getting gluten cc, as we eat very few processed foods, and almost all the grain products are either certified or from dedicated facilities. Our house is almost entirely gluten-free, with only a few packaged non-crumbly foods (chocolate with malt, etc.) that my spouse keeps in a separate cupboard and is very careful about. We've checked all condiments, toiletries, replaced kitchen equipment, etc. I eat the same foods as my daughter, who has biopsy-confirmed celiac and has been healing well, with just one apparent cc blip in May that we've traced back to a non-food source. I was exposed to the same source and did have a resurgence of diarrhea around the same time, so that could certainly explain a temporary return of symptoms lately. But prior to that my steatorrhea had improved a lot but still not gone away in about 11 months with no suspected cc. I do believe this is mostly likely just a residual symptom of decades of undiagnosed gluten problems, and if it weren't for my doctors insisting that NCGS doesn't have long-term effects like this I'd be content to just wait longer to see. I think you're right that doctors really don't know much about NCGS, and celiac hasn't really been conclusively ruled out in my case, so I'm really hoping this will just improve with more time.

I will go back to the rice-and-veggies only plan (temporarily) and try to built back up from there if no other answers are forthcoming from this round of tests.

[powerofpositivethinking]

I experience that falling feeling too!!  Thinking about it, that only happens maybe once every other week now.  I feel like I'm falling, and then I have what I pretty much equate to a full body spasm.  It's a strange feeling.  Before going gluten-free, my big toe would move on its own.  It sounds strange, but I would sit in bed and watch it move without having any control over it.  I am very happy to say that stopped happening a few months into the gluten-free diet.

 

strange stuff 

 

I had a sleep study done once, and in the pre-screening they asked me if I ever had those twitching jerks when you feel like you're falling. The nurses looked incredulously at each other when I said I had them multiple times per week, and sometimes multiple times per day. Apparently that only happens to most people a few times per year! (Most of my muscle twitches are not that big, though.)

[1desperateladysaved]

I realized better absorption (especially ferritin absorption) at about 18 months gluten free, so I think there still might be improvement to come!

 

Dee

[SMRI]

Have you been checked for lactose intolerance or a dairy allergy?  Do you have any lung issues--chronic coughs, pneumonia, bronchitis??

[greenbeanie]

No lung issues. I tested negative for cow's milk allergy. I was very lactose intolerant from my mid-teens until I'd been gluten free for about ten months, but that's much better now. It's only high-fat dairy, not high-lactose dairy, that seems to bother me. I was so used to avoiding dairy due to all the years of lactose intolerance that I don't eat much dairy now anyhow.

It did occur to me that gluten-free oats may be a problem. I didn't eat any for the first six months, but then I added them in slowly and thought I was okay with them. I only have small amounts a few times a month. I definitely don't have any quick reaction to them, but maybe an oat intolerance snuck up on me.

[powerofpositivethinking]

I cannot eat oats.  I think it was back in January I tried a small bit of the Udi's granola, and then I felt bloated and depressed for the next four days.  I may be able to tolerate them again in time, but let's just say I'm not in a rush to feel that way again 

 

It did occur to me that gluten-free oats may be a problem. I didn't eat any for the first six months, but then I added them in slowly and thought I was okay with them. I only have small amounts a few times a month. I definitely don't have any quick reaction to them, but maybe an oat intolerance snuck up on me.

[SMRI]

My GI and nutritionist told me no oats for a year....crud....

[greenbeanie]

Update: Well, the plot thickens. Fecal elastase was fine and my pancreas looked normal on MRI, so apparently that's not the problem. My vitamin K level was in the lowest 20% of normal, which is odd because I eat tons of green veggies and take a multivitamin with it too, but it was within range. I seem to be keeping enough in my system despite the steathorrea, so that is good.

The MRI found multiple cysts on my spleen, two 8mm cysts on my liver, a cyst near my kidney, and numerous ovarian cysts several cm wide. The ovarian ones are not a surprise (I was diagnosed with PCOS years ago), but the others are. My GI's assistant said they want to do a follow-up ultrasound on the liver in six months, but she insisted that none of this has any impact on the digestive system at all. She didn't even mention the splenic cysts, but when I got a copy of the report I saw that the radiologist wrote much more about them than about the liver ones. So I guess my doctor thinks they're insignificant? Or she just didn't focus on them because the spleen isn't part of the digestive system? I have to wait another two months for a follow-up appointment to ask about it.

From the assistant's message, it basically sounded like my doctor has concluded that my malabsorption isn't caused by a primarily-GI problem and must be an allergy to some unknown food. But my allergist has tested me thoroughly and repeatedly for food allergies and strongly disagrees. They both have each other's notes, and once again it seems like they're both falling back on the "well there's obviously a documented problem, but it's not in my specialty so I can't help" line. So frustrating. From what I've gathered it sounds like it's fairly common to have one small cyst on an organ here or there (and ovarian cysts are very common) BUT it sure seems strange to have so many different cysts on four different organs in the same person, with no explanation whatsoever! There must be *some* doctor whose job it is to figure out such things!

[GF Lover]

Perhaps a biopsy is in order?  It would be invasive but would also be telling.  Did the report say they were calcified cysts?  Did the report say what type of splenic cyst it was?  Any parasites involved.  I'm sure you have googled about these and have the same questions as I do.  And ummm, splenic cysts can cause nausea, belching, indigestion....basically the digestive system.  Score:  Doctor 0.  You might look into a new Doctor to review all of this.  I always look for a D.O. not an M.D.  They seem to be a bit smarter...lol.  I agree with the ovarian cysts not being a problem right now and liver cysts are common also.  But all of them together must mean something.  

 

Colleen

[greenbeanie]

I agree, Colleen - I wasn't terribly impressed with my doctor's response. Granted, I just spoke to her assistant, so maybe the doctor herself will have more to say in person...when I eventually get in to see her. I always have to wait 2-4 months for an appointment for anything, as there's a shortage of specialists in my area. The wait to get in elsewhere as a new patient can be over six months. So I'll probably hang in for one more round, then look into switching doctors. My insurance won't let me have two referrals for the same specialty at once, so I can't schedule with someone else unless I first officially discontinue her as my GI.

The key sentence of the spleen part says "There are multiple nonenhancing T2 hyperintense signal abnormalities within the posterior spleen, the largest measuring approximately 6mm likely representing cysts." So they are fairly small, but multiple. No mention of calcification. I did travel to northern Brazil years ago and lived on a small boat on the Amazon for several weeks, with horribly polluted water. We had to bathe in it but never drank, brushed teeth, or cooked with it. I have been checked for parasites before, but maybe not the specific ones there. I'll certainly ask about this (and have one PubMed article on a parasite that's in Brazil and can cause multiple cysts, though it sounds like it normally causes larger ones). I've told doctors about the trip before, but they never seemed to think it was relevant. My diarrhea had started over a decade before that, so it couldn't be the cause of the original symptoms, but it may be responsible for the remaining steatorrhea now.

[GF Lover]

Yup, yup, yup.  You could be a "Mystery Diagnosis" Candidate....I love that show.  Sounds like you are on it.  Don't you just hate waiting for appointments, makes me crazy.  Keep hangin in there.  I'm hangin with ya.  This Brazil connection is intriguing even if the D started before from a different cause.  Interesting that they are within the spleen and not on.  Kind of isolates it as a spleen thing as the others are much more common.  They spleen is an interesting organ.  The immune connection and all that.  Sometimes I think Doctors look at problems in isolation.  They don't see the body as a whole and how one thing can throw off many systems.  They want to "hush the baby" and not figure out why it's crying.  Ok... mind is wandering...lol.

 

Keep us posted! 

 

Colleen

[1desperateladysaved]

I have uterine fibroid, ovarian cyst, and a cyst on my breast.  All of these my functional medicine nurse have to do with a hormonal imbalance in my case too much estrogen and to little progesterone over the years.  You might check into a hormonal imbalance of this kind.  The functional medicine nurse used saliva tests while the MD used blood tests to check hormone levels.  Both checked my daughter and agreed that she does have a hormone imbalance.  The dermatologist we consulted agreed also.  She looked at where the acne was to discover what kind it was.  The MD recommended she continue the supplement the functional medicine nurse recommended to balance her hormones.  My daughter's imbalance got realized because of acne and irregular periods

[greenbeanie]

I was diagnosed with polycystic ovary syndrome years ago, so I know I have a hormonal imbalance. But I feel like my hormones pretty much evened themselves out on their own within six months of going gluten free, though they haven't been checked lately. I did see the nutritionist that my PCP referred me to the other day, and she was very surprised that my gallbladder function and lipase hadn't been tested. I've asked my doctors about the gallbladder before and they dismissed that as a cause of the fat malabsorption for some reason. I don't know if some of my other test results ruled out gallbladder problems or what. I haven't had a HIDA scan, though my gallbladder was structurally normal on MRI (which I know doesn't rule out functional gallbladder problems). At my next visit I'll press my GI to explain again why she doesn't think this is a gallbladder issue. It's hard waiting so long between appointments and getting most messages through a medical assistant, who may or may not be relaying the doctor's comments accurately.

The nutritionist did give me one piece of advice that may be helpful: she took one look at a three-day sample of my normal diet and said I was eating tons of fiber already, and definitely should not be adding more. My GI kept pushing me to add more and more fiber (raw carrots every day, then also adding fiber supplements when that didn't help), even though I kept telling her that I eat LOTS of veggies already and that it makes no sense at all to think my diet is low in fiber. I felt like she'd stop helping me if I didn't take her advice, but maybe it'll register if she hears it from the nutritionist too. The nutritionist's advice is to try a month with much less fiber - cooked fruits and veggies instead of raw, white rice rather than brown, more processed foods. Though it sounds much less healthy in general, she may be onto something. Her idea is that my system might just still be so irritated that things are moving through too quickly. Having less fiber should slow things down and may give my body more time to absorb fats. It's worth a try, anyhow.

[GF Lover]

NatureMan.  I have split your post off of this established thread into a New Topic.  You may get more relevant replies.

 

It can be found here : https://www.celiac.com/forums/topic/109055-excess-fat-and-oil-in-stool/

 

Colleen

[greenbeanie]

Update: Well, I'm kind of happy to report that all of this led to as close to a diagnosis as I'm ever likely to get! As I've written in a separate thread at https://www.celiac.com/forums/topic/111191-any-scientific-evidence-than-less-than-20ppm-can-cause-ttg-rise/
my daughter (with biopsy-diagnosed celiac) recently had a doubling of her tTG for no apparent reason. One thing led to another, and I eventually discovered three certified gluten free products that we were using that contained tiny amounts of trace gluten, less than 20ppm. Two were flours and one was a spice. We only used small amounts of these - and again, they were certified by the GFCO and not mislabeled by FDA standards. We're talking really tiny amounts here! But I removed these products from our diet, and just three weeks later my daughter's tTG had fallen again. Her local GI and a celiac specialist at a reputable children's hospital have both agreed that the trace cc less than 20ppm is almost certainly the cause of her tTG rise.

And the thing is that my fat malabsorption went away once we eliminated these too! I haven't had the fecal fat test redone, but the problem is obviously solved, and everything seems completely normal - for the first time in as long as I can remember. I am thrilled. My own GI looked at this evidence, after having ruled out every other cause of the fat malabsorption that she could think of. And she looked back at my health history (including the long gluten-light period before testing), biopsy results, and vitamin and mineral tests and concluded that I have "presumed celiac". She said she was documenting it in my chart. It's not a "real" diagnosis by prevailing standards, but she finally concluded (and I totally agree) that the overwhelming weight of the evidence points to celiac, and indicates that my tests were most likely false negatives.

Separately, the celiac specialist we just saw for my daughter heard just the basics of this story - including the fact that only 4 biopsy samples were taken for me, and none from the duodenal bulb - and said that I should obviously assume I have celiac too. And he wasn't put off by the fact that I have DQ 7.5 (i.e., only the alpha allele of the most common celiac gene).

I am so relieved to finally have a somewhat-official diagnosis in my chart. Although it makes no practical difference in what I do - I'd already realized that I have to be just as strict about the diet as my daughter, and was doing that anyway - it is just a huge relief to have that recognized as necessary by doctors. After 34 years of doctors dismissing my symptoms and thinking it was all in my head, I'll hopefully never have to hear that again!

[cyclinglady]

I am so glad for you!

[nvsmom]

 Yeah!  Finally, some closure!!