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Renaye

Trying But Feel Like Giving Up

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I have been gluten free for 2 years, dairy, egg and peanut free for a year and just got an upper GI recently and damage still looks bad.  In fact, I don't have a celiac diagnosis but did test high for several gluten antibodies. 

I also am taking plaquenil for an unidentified autoimmune disease like lupus and am constipated without taking miralax.

 

I guess I am looking for answers of why my system does not look and function better after 2 years.  I am living with gluten eaters and wonder if cross contamination is the reason.  I am to the point that I question everything I eat these days and really don't think it is a healthy thought process.  I also wonder if my constipation would be better without grains.  I can't even think about taking anything else out of my diet, it just seems difficult.  Thyroid has been checked and is normal.   

 

Any suggestions are appreciated.

 

Renaye

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A couple of questions: when you say the damage revealed by your upper GI looks bad, what does that mean? If you don't have a celiac diagnosis, what are they looking at? Also, why are you taking medication for lupus? Do you have lupus or is your doctor trying to address a problem? It may be a combination of problems causing you difficulties.

 

It sounds to me like you need to have a serious talk with your doctor (or find a different doctor). Yes, it could take some time for the villi in your small intestine to heal, but two years seems a bit long. Also, yes, it is possible your are suffering from cross contamination. If gluten is your problem, you need a dedicated safe space in your kitchen with no possibility of shared dishes, utensils, or other items that may contain gluten.

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I just changed gastro docs because mine quit!!  This doc found scalloped mucosa and changes in the duodenum consistent with celiac.  I also had positive DGP IgG and DGP IgA in 2011. 

 

Yes, I am taking plaquenil for fatigue, mild joint pain, dry eye and mouth.  I have a positive Ds-DNA for lupus but no major problems or organ issues.  The fatigue is much better on plaquenil.

 

 I don't see my new gastro until next fall so I feel like I am on my own.  Not sure what he thinks of me yet.  Just told me what every gastro has said in the past.  Eat more fiber.

 

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You may need to really clean up your diet and remove any possibility of cross contamination and hidden gluten.  It doesn't take much gluten to turn the immune attack on.  Can you switch to eating only whole foods for a few months and see if it helps?  I assume you are doing the cooking yourself also.  If not, you should start doing your own cooking.  And not eating out at all.  Have you checked all your vitamins and meds for gluten?

 

There are only a couple possibilities that I know of.  Either you are still eating gluten in some way, possibly very small amounts you aren't aware of, or you have refractory celiac disease.  Refractory celiac disease is rare though, it is much more likely you are glutening yourself without realizing it.  A gastro can't tighten up your diet, only you can do that.  I hope you figure out the gluten source soon and eliminate it.  If there is a lot of baking in the kitchen you share, that could be a major cc problem.

 

By the way, with positive antibodies and a positive biopsy, there is no reason for the gastro to say you don' t have celiac disease.  That just doesn't make sense.  It's a good thing you are changing gastros!

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I think what the previous repliers said is good and thorough in the gluten area, and Id like to add to that in the "C" area.

 

I take plaquenil and other drugs for my lupus that cause severe "C".   I take usually 2 metamucil caps daily, but I dont take them if I have a super high fiber meal. I never  take stimluant medicine for that problem because I eat a ton of high fiber foods to offset it.  I make beans as the main meal at least once a week, eat them as a part of a meal about every other day, and switching any grain to the whole grain helps as well.  Broccoli, carrots, sweet potato(vs regular potatoes) squash, zucchini, and green beans are all favorites of mine that help with that as well.  If you are not a big vegetable person, find the most fiber- containing vegetable in a preparation you like(just not like drenched in cheese that defeats the purpose) , and eat the crap out of it.  

 

I don't think you need to take out grains, but you may need to over-adjust proportions of stuff.  Listen to your body and what your... bathroom trips... tell you.  Haha.  But really, some foods, like cheese, I eat I am guaranteed to be more "C" afterwards.  Certain medicines that I don't take all the time will stop things for sure, like hydrocodone after I had a surgery, I had to stop it and bear the pain.  So anything like that, definitely will need limited.  Others are the opposite, like cantaloupe.  I will buy a whole one and eat on it over a few days and if I do it too hastily, well, things go a lot better.  If you eat white rice, maybe try brown rice.  If you do a meal with 1/3 meat, 1/3 carbs, and 1/3 veggies, try a meal with 1/4 meat, 1/4 carbs, and 1/2 veggies on the plate.  Also swapping carbs or meat for beans helps, of course.  Hehe.  It is more of a lifestyle change, really.

 

A lot of times people are puzzled when a doctor just says "eat more fiber!!!" so I hope some of my examples have been helpful.  

 

Also, your plaquenil RX. is it for undifferentiated connective tissue disease?  That is usually the label they will put on for a diagnosis when you have something autoimmune going on but you don't meet the full criteria for a lupus or rheumatoid arthritis diagnosis.  Just curious on that one.

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You might need to set up a gluten free kitchen.  Perhaps your main kitchen can be made gluten free.  If you can't make that gluten free, a table, electric skillet, and utensils somewhere else in the house would be safer.  You may try the Special Carbohydrates diet which was made specifically to help people with celiac that didn't heal when expected. .

 

D

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Thanks for your help everyone. 

gluten-free in DC - All my biopsies have been negative?? Strange...I will look into making my kitchen more gluten-free friendly.  I thought it was pretty good but may need more help.  I believe my main concern for cc is that we butcher our own meat and my husband, no matter how much I tell him that spices need to be mccormick, he will come up with a seasoning that isn't.  So I guess I will not eat the sausage.  He also is the one that bbq's.  Most of the time there is no gluten on the grill but the boys like this one seasoning that they put on the steaks and even though mine don't have any, they are on the same grill.  I guess I can put aluminum foil under mine or george f. it. 

 

1desperateladysaved- I have looked into to the scd and gap diet and am still pondering both.  I have started making bone broth from the bones that we have although they are not grass fed.  I cant remember which diet, but I am not sure about eating raw dairy stuff??  Nothing seems easy.....kefir, ferment.....Still pondering though..

 

LauraTX- My diagnosis is only "sicca" but he is re-doing all my blood work this month.  He thinks I need answers.  I have symptoms of both scleroderma and sjogrens.  My constipation came before my plaquenil.  The only thing I was on before was dexilant.  Now I am on those meds, vitamin d, calcium (citracil) and zoloft.  LOL - kept crying on my way to work, thinking I was going to die before my kids were out of school so after a year of fighting it, I added zoloft. Much better now...

 

Diet - we eat more meat than vegetables although I have at least one at lunch and supper so I will work on that and beans.  Can't find many safe bagged brands.  Use bush's beans now.  I will try to buy more fresh vegetables and use less canned.  I try but not always succeeding.  Taking fiber supplements seem to make my constipation worse.  I have not tried metamucil yet.  Only brand left to try. 

 

Thanks - not giving up yet.  Renaye

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Look, I agree you need to clean up your kitchen. Put your foot down. Seriously. Cleaning up your food and kitchen is a heck of a lot easier than zillions of tests and continued pain and complications from gluten exposure.

Second, get ahold if your thyroid tests. Are they running just TSH or did they run free t3/freet4?

I know you have other ai involvement but that laundry list of meds and c sounds like the spiral many hypothyroid people get on when they have an untreated or undertreated thyroid at the core.

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Hi Renaye,

 

Scalloping is a sign of more severe villi damage.  Your new gastro needs some time to review your tests and history I suppose but hopefully he won't need too long.

 

Your idea of using aluminum foil on the grill sounds good.  You will have to watch out for sharing utensils tho.  That would be an easy mistake to make.  Maybe it would be safer to get a small hibachi for your food and let the gluten eaters have the big grill?  Or do the Foreman grill like you said.  That could work too.

 

I've done ok with Bob Evans original and sage sausage.  It comes in a roll.  Maybe if hubby sees you buying sausage he will understand the importance of making it gluten-free.  Might get a little glimmer in his head.. :)

 

There was a study someone posted a while back about celiacs who weren't healing on the gluten-free diet and were considered refractory..  They started them on a strictly safe gluten-free diet and the majority of them recovered.  So it makes a big difference if you are 100% gluten-free or just 99% gluten-free.  That 1% will getcha every time.

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Thyroid antibodies have all been normal.  One tsh reading in 2011 before gluten-free diet, was low at 0.307 which is hyper, right?  The rhuemmy doc will rerun them this month. 

I looked more in depth at the SCD diet and didn't realize there was a whole section for celiacs.  I am planning on getting the book this weekend.  I generally think I eat pretty good although I occasionally eat some chips and eat some gluten-free granola bars.  I guess a clean diet is nothing in a box or can.  I tend to buy food from alde's which say naturally gluten free. That may be some of my problem.  So I need to eat more fresh or frozen vegetables and fruits.  No sugar?  No gluten-free homemade desserts?   hum..

I have been to 4 gastro doctors in the last 10 years and not a one has helped me with diet.  Sad, isn't it?  It makes me want to be a nutritionist or something. 

 

Renaye

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I have been gluten free for 2 years, dairy, egg and peanut free for a year and just got an upper GI recently and damage still looks bad.  In fact, I don't have a celiac diagnosis but did test high for several gluten antibodies. 

I also am taking plaquenil for an unidentified autoimmune disease like lupus and am constipated without taking miralax.

 

I guess I am looking for answers of why my system does not look and function better after 2 years.  I am living with gluten eaters and wonder if cross contamination is the reason.  I am to the point that I question everything I eat these days and really don't think it is a healthy thought process.  I also wonder if my constipation would be better without grains.  I can't even think about taking anything else out of my diet, it just seems difficult.  Thyroid has been checked and is normal.   

 

Any suggestions are appreciated.

 

Renaye

If your villi still looks atrophied it may be advisable to use Human Growth Hormone to for a while to kick start the regrowth of the villi. When I was hospitalized for my celiac because I had lost so much weight the they needed to feed me on TPM-feed me through a tube a portion of the nutrients they gave me was HGH. It might work for you ask your doctor

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A couple of questions: when you say the damage revealed by your upper GI looks bad, what does that mean? If you don't have a celiac diagnosis, what are they looking at? Also, why are you taking medication for lupus? Do you have lupus or is your doctor trying to address a problem? It may be a combination of problems causing you difficulties.

 

It sounds to me like you need to have a serious talk with your doctor (or find a different doctor). Yes, it could take some time for the villi in your small intestine to heal, but two years seems a bit long. Also, yes, it is possible your are suffering from cross contamination. If gluten is your problem, you need a dedicated safe space in your kitchen with no possibility of shared dishes, utensils, or other items that may contain gluten.

In the individual the villi does not fully grow back fir reasons that are not fully understood

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Somehow I don't think introducing a growth hormone might be the best idea... anyone else ever heard of this ever being used?? Celicajohn, do you know why your doctor would have tried something like that. is there any research it would really work?

 

Bottom line: Don't give up! I went through a rough time my 2nd year in too. Sometimes we end up becoming more sensitive to gluten than we were before. The best thing to do first is take stock of the state of your kitchen and get rid of anything that might cause cross-contamination. Sucker someone into helping you clean. Give your gluten-eating house (family?) members a good refresher course/lecture on how to keep you safe and healthy. Sometimes its little things that you wouldn't think of. It accumulates and results in misery.

 

If your test results "tested positive for gluten antibodies" AND there was damage shown in your biopsy, then that sounds an awful lot like Celiac to me. Your other health issues could be contributing to the problem, or it's possible that any low-level exposure to gluten could be affecting your other health problems. If there's anything I've learned, it's look at your diet first. If you can't do anything to help it that way, then let the doctors figure it out.

 

Stay tough and good luck!

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