Holy Masabsorbtion, Batman!

[JenKuz]

So here they are. I guess the antigliadin makes sense in light of everything. The malabsorbtion score floored me, however. I knew it was bad, but this bad? No wonder I've been such a wreck lately.

So I need advice on vitamins, keeping replenished, etc. I guess. And will also be avoiding wheat, although it's nice to know that I don't have the autoimmune syndrome, "just" the sensitivity...

Fecal Antigliadin IgA 20 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 9 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 1223 Units (Normal Range <300 Units)

I guess I'm here to stay. I'm glad ya'll are so nice

[aikiducky]

Not meaning to make you feel bad but that's the highest malabsorbtion number I've seen on here... Hey at least you know how to turn it around, right?

I think the priority would be to avoid gluten religiously so that you start to absorb stuff again, otherwise supplements won't do a lot of good? And eat a nutritionally dense diet, you can't afford to waste stomach capasity on junk...

Pauliina

[CarlaB]

That's really high malabsorption ... especially for those other low numbers ... I know Enterolab says a low or high number doesn't indicate better or worse, but I'd be on the lookout for other food sensitivities ... especially dairy and soy, which can also cause malabsorption (at least I've read that here).

Take a good multiple vitamin. I'd also take C, B-Complex 100, Cal/Mag/zinc, and E (no more than 600mg). But, that's what's working for me. Seems like everyone around here benefits from B, C is good for everyone, we are prone to osteoporosis so need calcium.

I woud be sure to make your food count. If you're only absorbing a small part of it, it's better to absorb a small part of a steak and broccoli than a small part of a gluten-free donut. I am eating only meat, eggs, veggies, potatoes and rice (including pasta and gluten-free bread) until my gut heals. I do eat 1/4 of a gluten-free donut and a cup of decaf coffee on Sunday ... I do not cheat, but I feel really bad ...

[JenKuz]

Not meaning to make you feel bad but that's the highest malabsorbtion number I've seen on here... Hey at least you know how to turn it around, right?

I think the priority would be to avoid gluten religiously so that you start to absorb stuff again, otherwise supplements won't do a lot of good? And eat a nutritionally dense diet, you can't afford to waste stomach capasity on junk...

Pauliina

I think I'm going to email enterolab when I get a chance to see whether there are things that could make a number artificially high. Like anything I might have eaten beforehand. And I might ask my regular doc to do the 72 hour test to double-check. Anyhoo.

You're right on the diet. I'm going to do my best at reforming The sub-lingual B vitamins have been helping, but I think I might need to meet with a nutritionist.

That's really high malabsorption ... especially for those other low numbers ... I know Enterolab says a low or high number doesn't indicate better or worse, but I'd be on the lookout for other food sensitivities ... especially dairy and soy, which can also cause malabsorption (at least I've read that here).

The other possibilities are chronic pancreatitis and crohn's disease, too. I'm going to make sure they rule those out before assuming anything. The next step will be food intolerance testing.

Another possibility the doctor raised is that I may have tropical sprue, since I spent three months in Africa before getting ill. The maps I looked at said it was very rare in Africa, it was more likely in Asia, so I don't know. I would gladly have them treat me presumptively for that (what's one more anti-microbial? I've already taken 500! And I'm a pro at pro-biotic reconstitution of gut microflora by now) but given my anti-gliadin, gluten is surely also involved.

Wouldn't it just be a hoot if I had BOTH celiac AND tropical sprues? Yikes.

[Rachel--24]

I dont want to alarm you but thought I'd mention that something other than gluten could be causing malabsorption that extreme. Mine was 913 and I actually dont think I've ever seen anything higher until I just saw yours. My other numbers werent high either but both were in the positive range. I think my tTg was 17....I didnt think it corresponded well with such high malabsorption.

The tTg is what is specific for "damage".....yours appears to be normal.....way out of sync with the malabsorption score. I agree with the previous post and would also keep on the look out for other possible causes besides gluten.

My report came with a list of other conditions that can also cause malabsorption and in my case it turned out that its not being caused by gluten (or any other food that I'm aware of). I'm still in the process of determining the true cause. Check your report...there should be a list of these other factors which may need to be considered.

[AndreaB]

Also, in the process of looking for answers to your high malabsorption score,I would highly recommend going dairy and soy free as well to give yourself some help in healing. Dairy and soy also can cause problems with the intestines.

My oldest son had a malabsorption score just over 500 which isn't bad, but his gluten sensitive score was only 10.5....just over the cut off. I think soy played a bit part with him even though that was just under the cut off. He hadn't had any dairy. He drank a lot of soymilk, but otherwise at the same as the rest of us at the time.

[Matilda]

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[Matilda]

...

[Rachel--24]

The question of whether DQ1ers get raised Enterolab anti-tTG's or high malabsorbtion scores without (usually) getting positive biopsies or blood tests was discussed on a Brain Talk thread.

Actually, your results were discussed Rachel, because someone from here mentioned them. Your name wasn't mentioned, but it was around the time you posted your results here. I think some other DQ1's had similar results. I wish I could link to the thread, but all the old Brain Talk stuff's still missing.

Best wishes,

Matilda

Thats interesting Matilda...I'd actually done some reading over there trying to learn more about DQ1 last year. I never saw anything specifically having to do with my results but I noticed alot of DQ1'ers were pretty bad off with regards to symptoms and intolerances. They were saying DQ1 is a bad bad gene. My biopsy was text book perfect but yet I had high malabsorption....the problem is still there but I manage it alot better now. I've been gluten-free for all this time....even 4 months prior to the Enterolab tests. I think in my case something else is contributing to the malabsorption ...I dont think it can be related to gluten at this point.

Do you recall why they thought that DQ1'ers would have positive tTg with Enterolab but no visible damage seen on biopsies? I'm wondering if other things can raise tTg levels unrelated to Celiac/gluten intolerance.

[CarlaB]

I'm double DQ1, my absorption was 285, but I had been very low wheat for 3 years, gluten-free for six months, then a 6 week challenge, then gluten-free for 3 months more when the test was done. I had noticed extreme changes for the better in my bm's from nine months earlier when I was losing a pound per week, so I'm sure it was a lot worse back then.

You can see my Enterolab numbers below. The possibility exists that my blood test and biopsies were inaccurate because of my diet. However, I am wondering if any DQ1 with no DQ2 or DQ8 has ever had a positive biopsy.

My health seemed to indicate there was more of a problem than intestinal damage, so I also wonder if the tTG in a DQ1 might indicate autoimmune reactions elsewhere. I never participated in the forums you mentioned, so I don't know if any of this was discussed.

[Matilda]

...

[Rachel--24]

I'm sorry, I don't remember the thread very well. If I remember rightly Cara started the thread as a little survey, and she was wondering whether only DQ2's and 8's would get Enterolab results with raised anti-tTGs and malabsorbtion. Several DQ1's actually did have those, so I think that's a big mystery.

I recall reading something similar...may have been a different thread though. Its a shame the info. isnt available now.

One thing I do know is that there were ALOT of people with DQ1 over there and just like me....they were diagnosed through Enterolab.

There is one member of this board (cant think of who it is right now) that has DQ1 and was diagnosed Celiac with a positive biopsy. I dont know of others and I've raised the question in the past...but no responses. This one person did say that she knew other people (I think from BrainTalk) with positive biopsies and DQ1. I think its really rare though.

I think I remember that everyone was very impressed by your malabsorbtion score!

Yeah...I became very scared once I started searching the board and realized my results werent the "norm" around here. Other people had IgA and tTg FAR greater than mine and yet normal malabsorption scores. Something wasnt feeling "right" about it and I kept trying to figure out how that could be possible....especially since I'd been off gluten for awhile.

I'm not considering retesting my malabsorption right now. I just dont think it would be useful unless I was only worrying about whether I was getting gluten somehow or something like that. In my case I do feel other things are causing the malabsorption and it changes from week to week. I think I can actually adjust my diet and cause a high malabsorption score or vice versa. I've learned some of the tell-tale signs and know when to do a diet overhaul before the weight starts falling off. Now I just need to figure out WHY its happening.

I think the problem is always there but certain foods really aggravate the situation and in my case its not the most likely suspects like gluten, dairy and soy. If I ate yams for several days in a row I'd be in really bad shape....losing weight drastically but I can eat ice cream everyday and stay a healthy weight....not that its good for me.

Well..I dont actually know what gluten would do to me because I dont eat it...same with soy.....but I can eat some dairy and if I DO get symptoms they arent the ones that cause weight loss.

[JenKuz]

Thanks so much for all the helpful info, guys. I have to admit, I was really alarmed when I got that score. I almost cried.

What's so weird about it is that I haven't lost any weight. I guess I eat pretty well, and also my body has always been extroardinarily good at keeping it's "set point," which happens to be almost exactly the "ideal" for my height.

I dont want to alarm you but thought I'd mention that something other than gluten could be causing malabsorption that extreme. Mine was 913 and I actually dont think I've ever seen anything higher until I just saw yours. My other numbers werent high either but both were in the positive range. I think my tTg was 17....I didnt think it corresponded well with such high malabsorption.

The tTg is what is specific for "damage".....yours appears to be normal.....way out of sync with the malabsorption score. I agree with the previous post and would also keep on the look out for other possible causes besides gluten.

My report came with a list of other conditions that can also cause malabsorption and in my case it turned out that its not being caused by gluten (or any other food that I'm aware of). I'm still in the process of determining the true cause. Check your report...there should be a list of these other factors which may need to be considered.

I agree with you that something else is causing this malabsorption. I don't know what yet. I'd love it if you could give me some of the angels you're investigating. I have narrowed it down to pancreatitis, crohn's, tropical sprue, or other food intolerances.

Tropical sprue is a possibility for me, as I was in Africa throughout the summer of 2005. That's when my symptoms showed up. However, all infectious disease tests have come in negative, and most have been done more than once. Also, I've taken all the standard antimicrobials and then some, including (but not limited to): flagyl, ciprofloxacin (twice), doxycycline, tetracycline, quinine, malarone, mebendazole, and two broad-spectrum antibiotics. After each I have taken probiotics religiously.

I think the severe malabsorption has come about relatively recently, perhaps the reason I haven't yet lost any weight. I imagine if this went on I'd start to whittle down. I also feel as though my metabolism is very very slow at the moment (my body temperature is around 96.5, and has come in as low as 95--that time at the doctor's so I know it wasn't the thermometer). In any case, the weird stools have been going on for a year and a half, but the whole bits of food in the toilet bowl has only come about over the past six months or so, and has been much more noticable in the past 6 weeks than ever before.

All in all, I think my body as at the tipping point--if the problem doesn't get solved soon, I am really afraid my whole system will shut down. I'm already easily fatigued and my hair has started falling out. I'm desperate to try to forestall the damage to my body i know is coming.

I also want to do the test again, just to be sure it wasn't a fluke. I know the standard malabsorption test is done over 72 hours, so I may try that one at student health just to see if it shows something different.

Rachel, I notice you had Grave's disease. I had hyperthyroidism of unknown origin as an infant--a very strange time in life to have it. They treated it, but my mom doesn't recall the name of the drug they gave me. It was not radioactive iodine, though, and my thyroid tests have been normal for years. Still, I wonder if there could be some connection there?

I'm really, really scared right know. I know a lot of folks around here have landed in the ER and been overall much worse off than I am at the moment, but I'm really afraid that that is in my future and I want to prevent it. Doctors don't seem to believe I'm really sick because I still look healthy on the outside. Hard to get them to see how messed up I KNOW I am on the inside. I hope this test result will help convince them.

Here's my big fear, and I hope you all can help me with it, or at least indulge me while I share it. I'm plannign my dissertation project in Zambia. I'm set to live there for two years. I already have funding for it, and if my health prevented me from going, it would devastate me, really. And it would be a big challenge career wise; not that I wouldn't find something else to do, but it would mean a few extra years in my program and it would be hard to switch my project since I already have grant money for this one. If it's something like crohn's, I don't think I'll be able to do it, though. I'm terrified that it will turn out to be something like that, and I just want to cry, or throw myself on the ground and pound my fists into the floor in frustration and rage and....well, I'm sure you all know the feeling. I'm feeling pretty low right now sorry to unload.

Hi Jen,

Wow, that number is really high.

Did you get the genetic test done as well? That would be interesting, particularly as you tTG wasn't very high. It will be really interesting to see what your biopsy shows. Also, I think it's worth asking Dr Fine what he thinks about it.

Best wshes,

Matilda

I decided not to get them done till i had the antibody results, cause the medical costs are adding up. I think now I'll have them done, though, along with the other food intolerance tests. That may help shed light on the situation. And I plan to consult Dr. Fine on Monday.

[aikiducky]

Am I right that you're at the moment still eating gluten waiting for tests?

I really hope for you (I know it's strange:)) that it's celiac or gluten intolerance! Because I think gluten free in Africa might not be that hard...

Pauliina

[JenKuz]

Am I right that you're at the moment still eating gluten waiting for tests?

I really hope for you (I know it's strange:)) that it's celiac or gluten intolerance! Because I think gluten free in Africa might not be that hard...

Pauliina

I decided to cut out wheat a week and a half ago, rather than to wait for the biopsy. Enterlabs are in my signature.

Africa is going to be easier, cause the staple food is corn, but all the restaurants serve bread, wraps and fried breaded things.

[Rachel--24]

I agree with you that something else is causing this malabsorption. I don't know what yet. I'd love it if you could give me some of the angels you're investigating. I have narrowed it down to pancreatitis, crohn's, tropical sprue, or other food intolerances.

I'm sorry you are going through so much right now.

I just read the last post....I didnt realize you were still eating gluten until such a short time ago. Things might improve for you on the diet. Make sure you are avoiding gluten 100% and hopefully it will make a difference in how you feel. Enterolab DOES state that numbers dont necessarily correspond with damage.

Some of the other angles I've looked into.

Other autoimmune diseases, food intolerances, candida, bacteria overgrowth, possible infections, parasites, Lyme Disease and mercury toxicity.

Everythings been ruled out and its come down to Lyme Disease and/or mercury toxicity. Still working on those last two and in the process of testing to rule these in or out.

I've had alot of tests along the way including endoscopy and colonoscopy which both looked completely normal.

Try not to worry yourself (I know its easier said than done). I find I feel alot better if I dont scare myself to death worrying about all the possibilities. I hope the diet...even if its only a part of the picture...will make you feel well enough to go to Africa and complete your 2 years there.

Rachel, I notice you had Grave's disease. I had hyperthyroidism of unknown origin as an infant--a very strange time in life to have it. They treated it, but my mom doesn't recall the name of the drug they gave me. It was not radioactive iodine, though, and my thyroid tests have been normal for years. Still, I wonder if there could be some connection there?

I'm guessing if your labs are normal the problem isnt Graves Disease. Symptoms can be weight loss, shakiness, eye problems, sweating, headaches, heart palipatations, a feeling of being wired, fatigue, hairloss, to name a few. Labs would usually reflect too much thyroid hormone in this case. I still have many of these symptoms and they are not due to the Graves Disease since I had the radioactive iodine to destroy my thyroid gland over 3 years ago. I'm now Hypothyroid and have to take thyroid replacement for life. It was a mistake to go through with the radioactive iodine because clearly something else was causing my symptoms but I believed the doctors when they said it would make me well again.

You have many symptoms similar to my own....I actually looked fine on the outside even though I knew I was having malabsorption. It took about 2 years in my case for the weight to start falling off. At the time of my Enterolab I was only 94 lbs. I've gained alot of weight back since then but am very careful with my diet avoiding many things besides gluten to keep from losing. My body just doesnt seem to be able to digest certain foods and theres really no rhyme or resaon to it. I'm still working things out but its looking alot like Lyme Disease. I was told my test was negative for this but apparantly there was a misunderstanding on my part and its likely that I do have it. I will know more tomorrow after speaking with my doctor.

Best wishes to you and I hope that the diet will do wonders for you....is this your first time actually eliminating gluten? You may be pleasantly surprised and I hope that you are.

[JenKuz]

Some of the other angles I've looked into.

Other autoimmune diseases, food intolerances, candida, bacteria overgrowth, possible infections, parasites, Lyme Disease and mercury toxicity.

Everythings been ruled out and its come down to Lyme Disease and/or mercury toxicity. Still working on those last two and in the process of testing to rule these in or out.

Wow, that's a lot of testing. Have you ever looked into Whipple's Disease? It's a progressive bacterial infection that can apprently cause the same kind of damage as celiac, but it's systemic, so it can harm other organ systems too. I'm going to start a new thread about it, I think, to see if anyone has been tested/treated for it. It should show up in a small bowel biopsy, unless the biopsy was taken from a place without fatty plaques. I guess if they didn't test for the bacteria at that time, then they might have missed it when they did your biopsies. Apparently it can be cured by 6 months to a year on antibiotics, though it does recur. I think it's fatal if it progresses.

Have you ever noticed an improvement in your symptoms while on antibiotics? Or had unexplainable fevers? If not, it's probably not worth spending the money to test for, but if so, you might ask your doctor about it. I think I'm going to make sure my gastroenterologists tests for it when he does the biopsy.

Whipple's seems like a reasonable differential diagnosis for celiac, but I searched the board and only found one mention of it.

[Rachel--24]

JenKuz,

I tested positive for Lyme disease so it looks like that might be the culprit. I had one positive test, another "weak" positive and now the Dr. wants a third test for confirmation.

OMG.....will the testing phase ever end???

[Matilda]

Whipple's seems like a reasonable differential diagnosis for celiac, but I searched the board and only found one mention of it.

For other people reading this thread, I think it's worth mentioning the difference between very common- celiac disease and gluten sensitivity, and extremely rare - whipple's disease or tropical sprue in the US.

Best wishes,

Matilda

[JenKuz]

For other people reading this thread, I think it's worth mentioning the difference between very common- celiac disease and gluten sensitivity, and extremely rare - whipple's disease or tropical sprue in the US.

Best wishes,

Matilda

Yes, I realize that Whipple's disease is rare, I think I mentioned that in the thread above. It is still part of a differential diagnosis, especially for someone like myself with a rate of malaborption that is not reasonably explained by gluten sensivity alone. That was the point of the above thread, actually. Better to investigate all angles. Since Whipple's disease is fatal if undiagnosed, it should be considered for people like me with apparent extensive small bowel damage and no evidence of celiac, but for whom gluten is a complicating factor.

[mftnchn]

Hi, I just bumped this thread up and wonder if any of you have any further thoughts about malabsorption scores. I had been noticing that most did not come near my score level of 1322! Yet I have more trouble with weight gain than loss.

Also I wonder if anyone knows more about tropical sprue and if constipation can also be caused by that. I have lived in Asia most of my adult life so would have been exposed.

[alamaz]

Wow! My malabsorption was high as well - 1164. Were either of you not responding to the gluten-free diet and that is why you suspect another underlying cause? All of my scores were off the charts:

Fecal Antigliadin IgA 317 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 139 Units

Quantitative Microscopic Fecal Fat Score 1164 Units

Fecal anti-casein (cow's milk) IgA antibody 180 Units

HLA-DQB1 Molecular analysis, Allele 1 0201

HLA-DQB1 Molecular analysis, Allele 2 06xx

Serologic equivalent: HLA-DQ 2,1 (Subtype 2,6)

I just assumed it was because I was so sick and I have two genes. Since I'm slowly starting to feel better I wouldn't think there was another issue going on with me but it's always possible. If you don't mind me asking why you were prompted to do more testing that would be great to hear.

[hathor]

Apparently, there are malabsorption scores that are even higher than those we are talking about. From Enterolab's web site: "Values from 300 to 500 malabsorption units represent mild malabsorption; 500-1000 moderate; 1000-1500 severe; and greater than 1500 very severe malabsorption (and possibly indicating a combination of gluten-induced intestinal damage and insufficient pancreatic enzyme secretion)."

[mftnchn]

No, I'm not looking for another diagnosis at this point, mostly just curious. I was not strongly symptomatic that I realized other than constipation. Also gluten free and casien free plus 800 mg of magnesium seem to be working.

Also was apparently being glutened by my hair products and when I started taking precautions with that, things are looking up.

Just wondering if the malabsorption could have another contributing source is all...

[mftnchn]

Apparently, there are malabsorption scores that are even higher than those we are talking about. From Enterolab's web site: "Values from 300 to 500 malabsorption units represent mild malabsorption; 500-1000 moderate; 1000-1500 severe; and greater than 1500 very severe malabsorption (and possibly indicating a combination of gluten-induced intestinal damage and insufficient pancreatic enzyme secretion)."

Yes, true. Its just that I had not seen anyone post here that was so high.