Talk Me Down - Dr. Mentioned Refractory And Lymphocytes

[julandjo]

So I went to a new GI doctor today, and for the first time since this began I saw someone who knows more about Celiac than I do. Yay! The dr. who diagnosed me never gave me any information besides "looks like you're a Celiac" and on another visit "you had a LOT of damage", so at this new dr. we went over all the records that were sent. She was shocked that certain things weren't done - like a bone density scan, labwork to check for deficiencies (some was done, but it wasn't the right test apparently), etc. So she's getting all of that done for me and I feel like I'm in very capable hands.

BUT. She looked over my loooong list of unsafe foods and my tiny list of safe foods, asked questions about any possible CC or ways gluten could be getting into my diet. Satisfied that I'm fastidious about that, she looked back at the pathology report and murmured something about lymphocytes being found in the biopsy. Then she mentioned she's suspicious that I might have type 2 refractory sprue, but for right now we're going to wait and see what all this labwork says.

In the meantime I came home and stupidly googled "type 2 refractory sprue"... and now I'm sort of freaking out about intestinal lymphoma. I'm almost 1 year gluten free (except for a doctor-ordered 2 week gluten binge so he could test me, which of course wasn't long enough to do anything but make me miserable). Many of my problems have disappeared - high blood pressure, neuropathy, rashes, numbness, brain fog - but my diet is utterly ridiculous. ANY deviation makes me so sick. Just yesterday I was desperate for a new source of fat so I ate about 1/4 of an avocado. I spent the next 18 hours in a LOT of GI pain. If I get into anything even CC'd by corn, it's a 2 or 3 day ordeal. The list goes on and on. By all counts, this level of sensitivity to so many things should be short-lived, right? What could be wrong with me?

[Gemini]

So I went to a new GI doctor today, and for the first time since this began I saw someone who knows more about Celiac than I do. Yay! The dr. who diagnosed me never gave me any information besides "looks like you're a Celiac" and on another visit "you had a LOT of damage", so at this new dr. we went over all the records that were sent. She was shocked that certain things weren't done - like a bone density scan, labwork to check for deficiencies (some was done, but it wasn't the right test apparently), etc. So she's getting all of that done for me and I feel like I'm in very capable hands.

BUT. She looked over my loooong list of unsafe foods and my tiny list of safe foods, asked questions about any possible CC or ways gluten could be getting into my diet. Satisfied that I'm fastidious about that, she looked back at the pathology report and murmured something about lymphocytes being found in the biopsy. Then she mentioned she's suspicious that I might have type 2 refractory sprue, but for right now we're going to wait and see what all this labwork says.

In the meantime I came home and stupidly googled "type 2 refractory sprue"... and now I'm sort of freaking out about intestinal lymphoma. I'm almost 1 year gluten free (except for a doctor-ordered 2 week gluten binge so he could test me, which of course wasn't long enough to do anything but make me miserable). Many of my problems have disappeared - high blood pressure, neuropathy, rashes, numbness, brain fog - but my diet is utterly ridiculous. ANY deviation makes me so sick. Just yesterday I was desperate for a new source of fat so I ate about 1/4 of an avocado. I spent the next 18 hours in a LOT of GI pain. If I get into anything even CC'd by corn, it's a 2 or 3 day ordeal. The list goes on and on. By all counts, this level of sensitivity to so many things should be short-lived, right? What could be wrong with me?

First of all, try to calm down. Lymphoma is still pretty rare with Celiac Disease and the VAST majority of cases are diagnosed before the Celiac is discovered. The fact that many of your symptoms have reversed makes me wonder why any doctor would think you have refractory sprue because on many levels, you are improving.

Many people make the mistake of thinking that gluten is getting into their diet when it most likely is other food intolerances

which are causing the grief. I had massive damage at time of diagnosis and, judging from my advanced state of malnutrition, the doctor was convinced I had no villi left. It did take me 3 years to recover to the point of being totally asymptomatic and gaining the weight back so 1 year into the diet is pretty early for you to be worried.

First off, you definitely need a pancreatic enzyme to help with digestion. Pancreatic insufficiency goes hand in hand with Celiac Disease. It's been almost 6 years from diagnosis for me but I still have to take a digestive enzyme when eating proteins and, especially, fats. I can only partially digest fats without one.

The only real piece of advice to give now is be patient...very, very patient. You may have to live with multiple food intolerances but you never know.....sometimes once the gut is completely healed as far as it's going to, you can tolerate many more foods. I know a fellow Celiac who had a list of about 15 foods she could eat in the beginning but that has expanded and things are getting better. I would get the digestive enzymes, though, they are an amazing help with certain groups of food.

Hang in there and think positive....you will get better!

[julandjo]

I should also mention, part of her concern was the fact that I've lost 40 pounds in this year, without trying to lose them. (I had it to spare so I've been pretty pleased about that, but I'm now at a great weight and continue to lose.) I'm sure it's got a lot to do with what I CAN eat - chicken, turkey, beef, yams, potatoes, carrots, peas, apples, blueberries, and olives/olive oil. Plus now that my gut can actually absorb nutrients, I'm no longer constantly starving so I eat way less than before gluten-free. (Really, how unfair is it that I couldn't absorb nutrients, but I still absorbed the calories?! Foul play!!) But it still concerned the doctor. Thank you so much for your input.

[GFinDC]

... I'm sure it's got a lot to do with what I CAN eat - chicken, turkey, beef, yams, potatoes, carrots, peas, apples, blueberries, and olives/olive oil. ....

I saw you can't eat peppers. You might want to take a pass on the potatoes for a while too, and see if you do better. Potatoes, peppers and tomatoes are all nightshades that bother me and others. Sweet potatoes are different and are ok.

Also, have you tried any pro-biotics? They might help some.

[julandjo]

I saw you can't eat peppers. You might want to take a pass on the potatoes for a while too, and see if you do better. Potatoes, peppers and tomatoes are all nightshades that bother me and others. Sweet potatoes are different and are ok.

Also, have you tried any pro-biotics? They might help some.

I do take a probiotic daily. I've not yet tried any enzymes though. And oh my gosh, give up potatoes?! I dunno, as long as I eat exactly what is on my list (which admittedly includes a LOT of Kettle brand potato chips - no gluten or corn!) I do great. It's only when I deviate at all that I get sick.

[mushroom]

Both posters have given you good advice. I am three years down the road and am still on probiotics, and have just reintroduced digestive enzymes because I was having nightime bloating and difficulty sleeping and nightmares. They have made a lot of difference, once again - it seems like I may continue to have pancreatic insufficiency. I am also one of those who avoids all nightshades and all legumes too - I eventually had to eliminate even green peas. But I am finding now that I can tolerate small amounts of previously not edible foods. Last night my hub used a box of pasta bought by mistake, which had both potato and maize starch and soya flour in it, and I did not suffer any ill effects. Formerly this would have triggered a major cytokine storm and atrial lfibrillation. I am thinking that if I can sneak a small amount of my forbidden foods in every now and then my body might no longer recognize them as 'self' and no longer attack them. But it has been a long time that I have been avoiding these things, and it will take patience and a lot of gut healing for you too. Ask your doctor about her thoughts on taking L-glutamine to heal the gut and see what she says.

[sb2178]

well, have your blood antibodies dropped even if they aren't back to "normal"? if so, it sounds like it's time to take a deep breath. As pointed out, healing takes time. I think typically you expect people to reach normal between 6 and 24 months depending on the degree of damage initially.

elevated lymphocytes are standard for celiac disease diagnosis. if this was a repeat biopsy, recently, it might be worth a little more investigation but as long as you are showing improvement, it's probably not time to worry about refractory yet.

And, of course, you reviewed possible environmental exposures? Occupational, kids, pets, husbands, construction, toiletries, nail biting, wiping down things... i remember someone with a very sensitive kid who's GI has them wiping down library books before bringing them into the house.

are you underweight? having GI issues when you stick to the restricted diet? I kept losing weight on gluten-free for the first 6 months, but seem to be fairly stable for the last couple. and my diagnosis wasn't even celiac due to a normal biopsy so damage must have been very very limited at the biopsy level.

Food sensitivities vary-- I have a friend who has been able to re-introduce after 5 years, but it really took five years. I think it's really a very individual experience. Peanuts were out for me for about 5 months, and now I can eat them in limited amounts without stomachaches. Not too often.

[GFinDC]

I do take a probiotic daily. I've not yet tried any enzymes though. And oh my gosh, give up potatoes?! I dunno, as long as I eat exactly what is on my list (which admittedly includes a LOT of Kettle brand potato chips - no gluten or corn!) I do great. It's only when I deviate at all that I get sick.

Well, paprika is a nightshade also. Check out this WF link for brief (not) list of nightshades. So you are reacting to 2 different nightshades already, peppers and paprika (based on your sig).

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Have you tried Food Should Taste Good chips? They make gluten-free chips also. They have sweet potato chips, olive chips etc. Pretty good. You might like like them.

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Ummm, eating a "LOT" of chips may not be a great idea. They are usually fried and that means oil which can be hard to digest. I like chips too, but I don't eat them every day or every week even. When I was in high school we had a kid who lived on chips and sodas. We all thot he would end badly. Turns out he is a writer now. See!!!

[julandjo]

Alright, I'm calming down now. I can't thank each of you enough for your input and ideas. On the enzymes - are pancreatic enzymes and digestive enzymes the same thing? Any suggestions for brands/presentations? Can L-glutamine be added in with most any supplements (I'm on quite a few)?

To answer another poster, our home is gluten free, including topical products and meds/supplements. I work from home so I don't have to worry about workplace contamination. We replaced all our cookware. The kids are gluten free, and my husband does not come near me after he gets home from work until his hands are washed and teeth are brushed (he eats a regular diet outside the home). My Celiac blood tests have always been negative... but the first test I got was at 3 months into being gluten free.

And GFinDC, I think you've convinced me. Potatoes are the only nightshade I can successfully (or not?) eat, so I bet you're on to something. A few months ago giving up one more food would have reduced me to a sobbing mess, but I'm at the point now where food is just food. It's no longer a comfort item or even something I get excited about. It's just fuel. So I think I'll survive giving up potatoes, at least for a while.

Again, thank you all so much. Indeed, I am improving slowly as I go along so you're right - things are headed in the right direction. I guess I've just had unrealistic expectations.

[T.H.]

What are your reactions to the foods that are making you sick?

My diet was extremely limited very quickly after going on the gluten free diet, as well. Mine was buffalo meat, carrots, organic avocado, sweet potatoes, quinoa, and amaranth, by the end.

Everything else made me sick, and every time I tried to find new food, it never seemed to work. But I wasn't sick eating the food I had...it just wasn't good, nutrient-wise.

I've been gluten free now for about 16 months now, and a few months back, finally figured out that most of my problem has actually been reacting to extremely minute traces of gluten in everything I'm eating.

Pesticides with gluten on my produce, or on the soaps washing my produce. mulch with gluten straw, sprays, shared harvesters and mills and processing equipment. It's been a long, rather nightmarish road, but it's getting there.

Corn also made me ill, but we're thinking that it is the gluten cc of the corn that is my biggest problem.

One thing that has helped me figure this out is that my reactions to these foods is all the same. Although I don't tend to get gut reactions, so that has made it easier for me to figure out that they are all the same.

If you are having the same reaction to all these foods, it might be worth considering as a possibility. Feel free to email me (email on my profile), if that might be a possibility. I'd be happy to share, if it might help. :-)

[Gemini]

I should also mention, part of her concern was the fact that I've lost 40 pounds in this year, without trying to lose them. (I had it to spare so I've been pretty pleased about that, but I'm now at a great weight and continue to lose.) I'm sure it's got a lot to do with what I CAN eat - chicken, turkey, beef, yams, potatoes, carrots, peas, apples, blueberries, and olives/olive oil. Plus now that my gut can actually absorb nutrients, I'm no longer constantly starving so I eat way less than before gluten-free. (Really, how unfair is it that I couldn't absorb nutrients, but I still absorbed the calories?! Foul play!!) But it still concerned the doctor. Thank you so much for your input.

The best way to sustain weight or gain muscle is to drink protein shakes, like body builders do. Add some weight training to that and you can still turn things around.

Even after I healed, I still had trouble maintaining my weight and I think it had mostly to do with eating a healthy diet. Lean protein, lots of fruits and veggies and dessert on occasion and not as a staple will keep you from gaining anything. It's life's dirty little secret! I just wasn't eating enough of the right types of food to gain weight. Then I discovered the joys of weight training, after receiving a diagnosis of osteoporosis in my spine. I have gained 4 pounds of muscle yet my pants still fit the same. Who doesn't like that? I drink protein shakes now and have found them to be very helpful in stabilizing weight and as a Celiac, this could be what you have to do. Even after healing, it can be challenging to eat right and not dump more weight.

I know weight loss is a red flag for doctors but I also get very annoyed with the AMA for unnecessarily scaring the hell out of people. Statistics are there to show that most cases of lymphoma are discovered pre-diagnosis of Celiac, while people are still ingesting gluten. If you go 5 years with no cancer related issues (to Celiac) then your odds fall back to those of the general population. I would say better than the average Joe because serious Celiacs tend to eat much better than the general population.....we have to. If you really look at what most people eat and put in their grocery carts, it's downright scary and I am not surprised at the number of people with cancer today. I tend to think on the positive side of things and if I had a dollar for every time a doctor thought I might have cancer when in fact it was Celiac related symptoms, I'd be much closer to retirement. Try the protein shakes, along with pancreatic enzymes. I have to take the enzymes with the shakes because it can be hard to digest protein....at least for me. I can supply you with a link for an on-line store for gluten-free protein powder and for the enzymes I use. They are not cheap but are of excellent quality and are gluten-free. You will not get this kind of advice from a doctor, even though they should be counseling people on stuff like this. I have been in your shoes and it is scary but, more times than not, it's nothing more than finding the right combination of things to aid healing.

[julandjo]

I can supply you with a link for an on-line store for gluten-free protein powder and for the enzymes I use. They are not cheap but are of excellent quality and are gluten-free. You will not get this kind of advice from a doctor, even though they should be counseling people on stuff like this. I have been in your shoes and it is scary but, more times than not, it's nothing more than finding the right combination of things to aid healing.

This is great info. I would love to have that link. Thank you!

[Gemini]

This is great info. I would love to have that link. Thank you!

No problem!

Open Original Shared Link

I use the BioChem powders and they are quite tasty. I like the vanilla and it mixes well with water or on occasion, I use a 50/50 mix of water and soy milk. If you don't feed your muscles with enough protein, you will not build muscle. You also have to exercise. Just by doing these 2 things, I have been able to gain some weight and have never had this much energy before. It really works. Feel free to add other stuff to the protein shake like fruit or ice cream....whatever your body can tolerate. I sometimes add the coconut milk ice cream, as I cannot tolerate much dairy, and it's really yummy.

Now for the digestive enzymes...

Open Original Shared Link

These work very well for me and made a huge difference when I was eating a higher fat/protein meal. I just cannot digest a big dose of either without help. I think many Celiacs have this problem and those who still have complaints of dietary reactions should look into taking enzymes. It could be as simple as just not having enough of your own to digest a bigger or heavier meal. There are also reviews on the website for each product, from other customers, which I always find helpful. Good luck!

[sb2178]

Yes, the digest gold are pretty effective. wicked expensive, but if you use a cheaper brand you'll probably have to take more to get the same effect.

I tend to be wary of protein drinks though-- it's a lot of processed soy, usually, rather than fermented soy. Or else they tend to be dairy-based.

[Gemini]

Yes, the digest gold are pretty effective. wicked expensive, but if you use a cheaper brand you'll probably have to take more to get the same effect.

I tend to be wary of protein drinks though-- it's a lot of processed soy, usually, rather than fermented soy. Or else they tend to be dairy-based.

Not all protein drinks are soy or dairy based. I use a whey protein drink and yes, that is derived from dairy but it is purified to a ridiculous degree

which makes it highly digestible. I have problems with dairy from lactose, not casein, and have no trouble with these drinks. You can also get egg based or hemp based protein drinks so there are many options. Body builders use these all the time and if there were any inherent dangers from soy or any of the other ingredients, they would not be as healthy as they are. I think the only thing you have to worry about is whether or not you are intolerant or allergic to any of the ingredients listed.

[julandjo]

Alright. GFinDC, I took your advice and cut out potatoes. WOW. I was immediately constantly starving and veerrrrry tired. It felt like gluten withdrawal! I took this to mean that I was addicted, and thus cutting it out was a good thing. In the 5 days since I've cut it out, I've dropped 3 pounds and (TMI warning), my stools are finally normal. For the past several months I've had pencil-thin stools... and now they're normal. I think we're onto something! I also cut out peas because once the potatoes were gone, peas triggered chest pain (a telltale food reaction for me) every time I ate them.

Here's my new question: How long until I should trial something new? Right now, I'm only eating chicken, beef, sweet potatoes, carrots, apples, blueberries, olives/oil, sea salt, and a handful of spices. I NEED more food and emotionally I'm not dealing well with such extreme restrictions. Yet I'm terrified to try anything!

I'm having another upper endoscopy this week. My new GI doctor consulted with the department head at the teaching hospital over my case - apparently the EGD I had done back in May was a "sloppy" one, and come to find out I'm nowhere near a clear case of Celiac. There was absolutely no mention of villous atrophy in my pathology report, my blood tests were unclear, and she mentioned something funky about T-cells again. I'm so very angry - WHY was I told by my superlame ex-GI dr. that I had Celiac?! I could be dealing with something else entirely here! I mean I *know* I have a gluten problem, but apparently my biopsies indicated the possibility of something more. Ughhh. Sorry to vent. I'm incredibly frustrated and HUNGRY.

[T.H.]

I think we're onto something!

That's wonderful! Man, it's great when you find the answer!

When I was on an elimination diet, the rules I was supposed to follow if I wanted to be really, really careful were to try a new food in a small amount (a few mouthfuls) and wait for 2 days to see if you react. If that's good, then try a larger amount - like a cup or two, and wait for two days to see if you react. And if that's good, my personal preference was to pig out like mad for two days on the food, and then wait two more days to see how it went.

That way, you don't get too sick if you react to small amounts, but you can also catch the reaction if it's one that is building up in your system, you know?

Now, if I reacted to a food, I was supposed to wait until the reaction went away - pain, dizziness, whatever it was, and however many days that took. Then wait 48 hours more, and then it should be safe to try another food.

This was the procedure I was supposed to follow for tracking food allergies. I do not know if someone has a different method for intolerances or not. We've used the same for both.

Right now, I'm only eating chicken, beef, sweet potatoes, carrots, apples, blueberries, olives/oil, sea salt, and a handful of spices. I NEED more food and emotionally I'm not dealing well with such extreme restrictions. Yet I'm terrified to try anything!

My diet is pretty much crud too, with some of the same foods (sweet potato, meat, salt, carrots) so much sympathy from this quarter!

Lemme pass on some oddball recipes that I had to do when I was on it, that might help you a bit with the lack of variety. :-)

1. Meatloaf - if you bake the sweet potato (red fleshed kind, yeah?), then mash it, you can add it to ground beef with a little salt, any spices you can have that would go, and bake it in a loaf pan to make a kind of meatloaf. It's mild tasting, but it's a little different, anyway!

2. Can you have the pale sweet potatoes? If you haven't tried them yet, the pale fleshed kind are much milder tasting, and can almost substitute for potatoes in a stew, if you don't add too many. We were just chopping up meat, what veggies we could have plus a few chopped up pieces of pale sweet potato, salt, and sticking it in a pot with water to simmer until it made a nice soup.

3. If you mash and juice the blueberries, you can boil the juice until the volume is down by half or so and it makes a thin syrup to sweeten stuff with. You can do the same with apples, too. Most fruit, really. Or just mash them and boil a little and use them as a fruit sauce over meat.

4. If you slice thinly and dehydrate the fruit, when it's dry, you can blend the crud out of it in a blender and make a powdered sweetener. :-)

5. Grate the sweet potato. Different sizes of grating helps in this one, but isn't necessary. Put aside a little of it to blend up in a blender or mash into a paste. Then squeeze the water out of the grated potato with paper towel. Mix it with some salt, whatever spices you can use that would go well, maybe even a little apple chopped in little pieces and peeled. Then mix in the blended/mashed sweet potato and form it into little cakes, a little smaller around then a mug bottom. Pre-heat a pan with some oil and fry these up. It works even better if you do this in an iron skillet, and then pre-heat an oven...fry until just browned on either side, and then just stick the iron skillet in the oven and finish it up for about 5-10 minutes - gets a little more done in the middle that way.

If you ever get a starch you can use, that's what the original recipe calls for instead of the mashed/blended sweetpotato, to help bind it together. I've seen egg added in some versions, too.

6. Stuffed apples - no idea if this would work, but maybe you could core and stuff the apples with a little cooked chicken and spices and bake 'em? Might be good.

Really sorry you have such a limited diet - it is SO hard not to eat other foods, I know! But you might be able to get really creative. :-)

Oh! If this looks like it's going to take a while and new foods are coming slowly? You can look up old fashioned ways to make apple cider vinegar without adding anything to it, just using the natural bacteria and yeast in the air. :-) Give you vinegar, at least! It takes a month or two to make, though.