What Else Can Cause Celiac Damage To Villi?

[GottaSki]

What else can cause Celiac damage to Villi?

I was diagnosed three years ago with Marsh Stage 3B and 3C.

At a year completely gluten-free I had some digestive improvement, but still had severely damaged villi.

This past year I removed every food intolerance via a very strict elimination diet/symptom log - had remarkable improvement was healthier then EVER in my life for 9 monhths BUT then had yet another fibromyalgia type flare that knocked me completely back to extremely ill for the past four months.

Docs can't find anything -- not like I haven't heard that for many years before celiac dx

One thing does confuse me -- I have been gluten-free for 3 years (yes I know there is no gluten in our house and I never eat out unless I bring my own food) - recently had a third endoscopy that showed active celiac - Marsh 3A! Celiac doctor is stumped called my case functional gastrointestinal disorder (just another way of saying IBS IMHO).

SOOOOOO....what else can cause Celiac damage to villi other than gluten and/or prevent any significant healing?

Any ideas?

Thanks!

[Ninja]

Have you looked into immunodeficiencies?

Hugs,

Laura

[GottaSki]

Hi Laura-

Only had repeated full blood counts - one out of maybe five over the past few years showed low lympocytes, but all others were "normal".

I'll look into other blood tests for immunodeficiencies.

Thanks for the suggestion

[Bubba's Mom]

I had the same thing. Repeat endoscopes showed severe damage not healed by going gluten-free. There are other things that can cause villi flattening. I went to the Mayo Clinic for more tests. In my case they *think* it's from small intestine bacterial overgrowth(SIBO). I quit eating dairy and soy too.

I was put on Endocort, a mild steroid that stays in the digestive tract and is usually used for Crohn's. I was also given several rounds of antibiotics, along with probiotics. I was also put on RX digestive enzymes. It's been 5 months on this treatment plan and a more recent scope showed some healing. I'm finally gaining my weight back too.

Here's link to other causes for flattened villi...

https://www.celiac.com/articles/50/1/Main-Causes-of-Flattened-Villi/Page1.html

I

[Lisa]

Other causes of blunted villi include tropical sprue, malnutrition, intolerance to cow's milk, soy protein intolerance, and infectious gastroenteritis.

Ooop, Bubba's Mom has a more in depth link.

[GottaSki]

Thanks all!

We've ruled out most of those...but I will check the list closely again.

Bubba's Mom - My doc also suspected SIBO (breath test negative, but that happens often) so I went from my already restrictive diet to GAPS intro along with antibiotics followed by strong probiotics - no change thus far. Happy to hear you have had some healing - will research endocourt and talk to Celiac GI about same.

The other item I am checking is thyroid - as I have had hypothyroid symptoms my whole life but ALWAYS have "normal" blood tests...have done a lot of reading of others that had test similar to mine that were helped by thyroid hormones (High normal TSH, very low normal free T3 and T4). Antibody tests for Hashi's was negative, but I still wonder.

Thanks again - all ideas welcome

[GlutenFreeAustinite]

Could it be refractory sprue, the type that is non-responsive to being gluten-free?

[Ninja]

Hi Laura-

Only had repeated full blood counts - one out of maybe five over the past few years showed low lympocytes, but all others were "normal".

I'll look into other blood tests for immunodeficiencies.

Thanks for the suggestion

Yes, I'm by no means an expert on this.. but Common Variable Immune Deficiency (CVID) can cause villi damage (and other kinds of immunodeficiencies can as well, if I recall correctly). Here's two links: Open Original Shared Link ; Open Original Shared Link ... Getting your antibody levels tested would be a good start, I think. There are subclasses to IGG, so make sure to get those done as well.

Do you "catch" illnesses easily?

Laura

[GottaSki]

Thank you GFAustinite-

Refractory Celiac is a possibility -- confused because I have had two windows of great health over the past years since Celiac Diagnosis. A future step may be the meds for refractory, but have avoided thus far as I have horrid reactions/side effects/hyper sensitivity to nearly every medication.

Hi Laura-

No, I don't catch illness often -- most of my life I thought I was catching flu bugs all the time, but about 5 or 6 years ago I realized I never got a fever with these flu bugs and in hind sight I now know the stomach flu symptoms were celiac -- the aches and pain type bugs lasted longer and longer until I had symptoms 7/24 these are what are labeled fibromyalgia.

Thanks for the links!

-Lisa

[Bubba's Mom]

The tests for SIBO aren't 100% accurate..and if you get a positive test, they don't know which strain of bacteria is the problem. Certain antibiotics are used for specific strains.

My test showed a high hydrogen reading..but methane as well. I was told that's very unusual. I went on 3 different antibiotics without seeing any noticeable difference. I'm now treating it with a couple of different probiotics every day. I was told acidopholus is especially for killing off yeast, which they can't really test for.

I didn't stop losing weight until I went on the entocort. The fact that I had a good reaction to a steroid implies that my damage is autoimmune, not just SIBO.

I saw a couple of specialists at Mayo. I went to Florida and Minnesota. Many tests later they are sort of scratching their heads, but they ruled out refractory sprue by the counts of epitheliels and lymphocites from my most recent endoscope.

They also took me off the Singulair I was on. In some people it can cause gut damage that looks like Celiac. I'm off Protonix, and my blood pressure med too. Mayo is doing a study of RX drugs that can cause villi damage. You may want to see if you drop any RX drugs you may take to see if it helps, with your Dr.s guidance of course.

[GottaSki]

Thanks Bubba's Mom!

Great help to know what others with unresolved symptoms are testing for - sorry you are still having docs scratching their heads too - so frustrating - especially because it took them 43 years to find my celiac - was so hopeful back when I got diagnosed that my health would finally be fixed.

Question - do you know what the counts of epitheliels/lymphocites were?

I'm not on any Rx drugs and have not been since a failed course of Fibro meds back in 2009 - unfortunately I am hypersensitive to all meds - have never had a good result from any Rx -- yet am interested in possibly trying corticosteroids or thyroid hormone in the coming months since I'm not seeing much improvement in the possible SIBO and am not convinced my symptoms could be caused by SIBO. I've had hypothyroid symptoms my entire life - but always had "normal" blood work. Seems there are many folks that have similar blood work to me that have been helped with hormones. My TSH is always on the high side of normal with T3 and T4 on the very lowest mark of normal. Since my unresolved symptoms are all hypo it is likely my next step to trial hormones.

I am on vitamin B, D, Calcium, Multi and probiotics -- recent additions of peppermint and oregano to see if that helps with the possible SIBO (some recent days I think this might be helping).

Oh and I don't lose weight - I hold on to too much -- I eat about 800 calaries a day of meat and vegies and am still not losing any. I did lose about 30 pounds the first year gluten-free when my digestive system improved a bit, but still hold onto at least an extra 30!

Thanks again - I greatly appreciate everyone's thoughts and experience

[dilettantesteph]

What is your diet like? My gastroenterologist first told me that some celiacs will react to the tiny amount of gluten allowed in gluten free foods. There are some references for this in the FDA Gluten Hazard Assessment Report. I have heard figures like 99% don't, but you could still be in the 1% that do. Have you tried a whole foods only diet? That was the only way that I could feel symptom free.

[GottaSki]

Great question -- I am definitely part of the 1% -- long history of removing foods:

Mostly whole foods since 2010 - completely whole foods since last summer.

Currently only eating meat, vegies, broth -- progression of foods removed was like this:

March 2009 - Gluten Free

had improvement to digestive symptoms and lost about 30 pounds first year, but had many other symptoms remain or worsen.

2009-2010 - Trialed removing almost all possible intolerance - one item at a time - nothing was revealed.

August 2011 - Strict elimination diet to remove all lectins - started with green smoothing detox followed by meat, vegies (no nightshades) and fruit (no citrus, strawberries or bananas) - had remarkable improvement - within a couple weeks I was healthier than EVER in my life - that was so incredible, beyond belief - everyone thought I was a miracle -- I trialed each of the removed foods one at a time at one week intervals - was highly intolerant of all but eggs and butter -- had completely different reactions to all of them, but generally was fine within a day each time. Stopped trialing in December because I was sick of getting sick and only had some grains and nuts left, but had suck serious reactions to corn, rice and seeds I figured I try them after a year of healing. Wonderful health remained until....

February/March 2012 - Severe flare of all fibromyalgia symptoms followed by some digestive problems again.

That brings us to the past few months -- possible SIBO diagnosis with all the fibro symptoms led me to start GAPS Intro -- Meat, Cooked Vegies, Broth only (supposed to do probiotic foods, but I have yet to be able to tolerate homemade fermented items - I do take strong probiotic)

Sorry for the long answer - but thank you very much for your thoughts

[RuskitD]

GottaSki, you are not losing weight because you are starving. No one should be under 1200 calories a day. You are only taking in 800, and of that, who knows how little your damaged body is taking in? I know its scary, you are afraid you will gain weight if you eat more, but you HAVE to UP your caloric intake or you will not lose weight!

I was there myself, so I know. After going gluten-free I was not hungry. I wasn't about to eat so much at a meal as to cause stomach distress and bloating, I lived that ALL MY LIFE on gluten! For the first time in my life my stomach didn't hurt and I sure wasn't going to make it feel bad by over-stuffing myself.

Family said I eat like a bird. So out of curiosity, I joined an online 'diet' site, that allowed me to log every bite of food. After keeping track for two weeks, I averaged 800 calories a day. Some days as low as 500. I thought 'eating until I was satisfied' was an indicator of enough food. But I realized my healing body had no clue what was 'normal', what was 'satisfied'. All it knew was it was sick, and it wanted to repair itself.

If you are not getting nutrition, how can your body heal? How can your hormones balance? It can't happen. You body needs all the nutrition it can get. With mal-absorption, chances are a great deal of the food you eat isn't even going into your system. You may actually be getting 400 calories a day into your blood stream. Your body would barely exist on that. It would have no energy to heal.... just exist.

For your health, and for your weight loss goals, you really need to UP your calories. I don't know how tall you are, you can find online calculators to help you. But let me share with you what I did. I added 1000 calories a day, for a month. SCARED TO DEATH I would gain!!!!! I did NOT gain an ounce, I began to lose. I believe it was mostly fluids, but that was good. In starvation mode, your body will bloat. (you may also carry some inflammation in your body it cannot get rid of due to starving) A starving body hangs onto everything it can just to keep going. When it knows it will be given what it needs, that it can count on that nutrition coming it, it quits clinging to fluids, and lets them go. I was not obese, as the charts said! I was filled with fluids.

After a month, I dropped my calories down to 1200, even tho the calculators said 1500 for me. I stopped losing. UGH! I upped it to 1500 and began losing again.

I have no idea how much of my intake my body actually absorbs. Part of eating is just having faith that even though you cannot see the changes, you have to believe giving your body what it needs is making it start to work like it should, and that things are healing and adjusting in there. Even though you have no way to see or measure it.

One thing others here have preached, and I listened, was healthy fats. It was a way to increase my calories without stuffing my stomach to overfull. Coconut oil and avocado every day. Its working !!!! Healthy fats do so much to heal our bodies in so many ways.

I know you will be scared, but try what I suggested for a month. What have you got to lose? You may in fact gain your health and begin to lose the weight. Clearly, what you are doing now isn't working for you.

Good luck!!!!

[GottaSki]

Thank you so much, but I am not scared to gain weight -- I have never in my life been afraid to eat healthy food (well maybe during the teen girl years ) -- there is just not much I can eat right now -- I am adding healthy fats to all of my GAPS soups/meals.

I actually lost 30 pounds my first year gluten free and had a wonderful healthful period just prior to my most recent flare during which I was able to eat more than ever in my life while slowly losing, able to exercise and work a very full day, etc....

As I became sicker with this most recent flare and the digestive symptoms returned my caloric intake decreased -- I'll be quite happy to eat more/increase caloric intake as soon as I am able.

I have no weight loss goals, only improved symptoms and hopefully one day health. I only intended to mention weight as a symptom, not goal. I have had unexplained weight gain my entire life while eating a very healthy diet, exercising more than most along with being very active during any time my health allowed.

You stated "A starving body hangs onto everything it can just to keep going." This is extremely accurate - which explains the unexplained weight gain over decades due to not absorbing nutrition from my food due to undiagnosed Celiac Disease -- I understand all this - which is why I am stumped by this latest flare - I was eating exactly what my body needed to heal (was healthier than ever before in my life) and yet I still had a flare that set me way, way back.

Thanks again

PS...I dream of eating avocado again -- it was the first item I lost during elimination diet -- total surprise severe reaction I hadn't really removed it during elimination, but ate it on day 8 in a salad. Re-trialed it at six months after I lost it per elimination diet protocol - no luck.

[Bubba's Mom]

Thanks Bubba's Mom!

Great help to know what others with unresolved symptoms are testing for - sorry you are still having docs scratching their heads too - so frustrating - especially because it took them 43 years to find my celiac - was so hopeful back when I got diagnosed that my health would finally be fixed.

Question - do you know what the counts of epitheliels/lymphocites were?

I'm not on any Rx drugs and have not been since a failed course of Fibro meds back in 2009 - unfortunately I am hypersensitive to all meds - have never had a good result from any Rx -- yet am interested in possibly trying corticosteroids or thyroid hormone in the coming months since I'm not seeing much improvement in the possible SIBO and am not convinced my symptoms could be caused by SIBO. I've had hypothyroid symptoms my entire life - but always had "normal" blood work. Seems there are many folks that have similar blood work to me that have been helped with hormones. My TSH is always on the high side of normal with T3 and T4 on the very lowest mark of normal. Since my unresolved symptoms are all hypo it is likely my next step to trial hormones.

I am on vitamin B, D, Calcium, Multi and probiotics -- recent additions of peppermint and oregano to see if that helps with the possible SIBO (some recent days I think this might be helping).

Oh and I don't lose weight - I hold on to too much -- I eat about 800 calaries a day of meat and vegies and am still not losing any. I did lose about 30 pounds the first year gluten-free when my digestive system improved a bit, but still hold onto at least an extra 30!

Thanks again - I greatly appreciate everyone's thoughts and experience

I don't know what the exact counts of my eosinophils/lymphocytes were. I was told that the ratio of them was what helped determine if I had refractory sprue or something else going on. In my case they noted a higher number of eosinophils. In order to be DXed as refractory sprue the lymphocyte count would be much higher.

With your thyroid levels...some people just seem to need different levels than what they call "normal". If you decide to pursue a medication for it, I hope you can find a Dr. that is willing to try it. You may find some resistance to trying it though? Dr.s sure do seem to like the numbers they say are "standard"?

Peppermint and oregano are supposed to help fight off SIBO, but it takes a lot of time to really equal things out. Keep taking them and the probiotics too. Coconut oil is very good too. It also has a lot of nutritional benefits aside from helping gut dysbiosis. If at some point you want to try the steroids, be sure to ask for the Entocort (budesonide is the generic), which stays in the intestine. (The more common use of it is to treat Crohn's). That way you will avoid the bone loss/thinning hair/belly fat, etc that can come from the system wide ones like Prednesone.

For quite a while I had a very hard time eating much. The second GI I saw told me to make sure I took in at least 1500 calories a day. Your body needs that much to just maintain itself. I found that when I started counting calories, I was falling short of the 1500. It's hard to get that many calories from meats, fruits, and veggies. Adding fats helped me..and our bodies need fats, especially the amino acids in them. Protein is important too, though.

If you are only taking in about 800, that's not enough. Your body is in starvation mode and that's not good for healing.

It's also possible that you could benefit from digestive enzymes? They help break down your food into fragments that allows your body to absorb the nutrients before any bacteria present can gobble them up.

I hope you can get things sorted out. I sure know how you are feeling...and it isn't good!

[GottaSki]

Thank you!

My digestive system seems to be settling a bit the past couple days -- I'll take anything I can get right now. Finished antibiotic for SIBO about three weeks ago -- upped the probiotic and added the pepperment and oregano at the same time...plan to keep them in the routine for a very long time. I sure hope they continue to work...was able to keep a lot more down today with a settled tummy - calorie count should be close to minimum target - which has always been 1500.

Good idea about digestive enzymes...haven't been taking them past month as I am only eating soups that I've been blending (even the meat) in further attempt to get as much in me as possible while taking it even easier on my system. Think I'll add them back in now and maybe I'll be able to tolerate something more than blended soups soon

Very helpful info regarding Entocort -- I did horrid on the one round of Prednisone I had a several years ago -- sure hope I don't need to go to steroids, but glad that you gave me the heads up if I do in the future.

Thanks again