Scared. Frustrated. Steroids!?!? Whats Going On?!

[Lyza Jay]

HI everyone. I am pretty new to this forum but not new to the gluten free diet.

I have been gluten free (to the best of my ability) for 3 years now. My symptoms were the big D and throwing up to the point where I wouldn’t leave the house and if i did, I wouldn’t eat the night before or day of. The doctor told me that taken gluten out of my diet would be too extreme and that i just have IBS. Well, i think IBS is just a label for "i have no clue what’s wrong with you" (sorry if that offends someone but seriously look deeper into it if you have it) so i did research about gluten and brought in a computer print up of the blood tests and wouldn’t leave the doctors office until she agreed to give it to me. The blood test came out positive, the doctor told me I was Gluten Intolerant and sent me out the door to live life in a glutenous world... little did i know how glutenous it really was.

So, basically I have learned everything on my own and am now catching on to reading these boards. Recently I had a really awful gluten attack that seemed to take me back to day one. Scared to leave the house, scared to eat...etc. I also lost a lot of weight in a really quick amount of time. Finally a different doctor sent me to a GI. (which i didn’t really know about). The GI knew about Celiac but left me hanging with some questions and weird ...things. So here are my questions and weird...things.

1. She wants to give me a biopsy now... I don’t see the point, I am not eating gluten. Could this mean she is testing for something else? Should I refuse and do Enterolab instead?

2. She is sending me to get an ultra sound of my abdomen... too look for "growths and rule out anything else it could be" (we all know what that means )

3. She said if I don’t start feeling better or gaining weight she was going to put me on steroids?!?!!??! WTH?! Has anyone heard of this before??!?!?

4. And, if all those don’t work she is going for the thyroid.

5. I have started having tingles in my legs... MS!?

6. I have never been fully diagnosed as celiac… or have i?

7. Is there something they aren’t telling me?

My mom rolls her eyes at me when i tell her that there is no point for the biopsy now. She says to "trust the doctor and stop reading the internet" ...it’s just so frustrating and hurtful. She doesn’t get that if it wasn’t for the internet, i would have never gotten the gluten diet or blood test! She also admits that she has done no research about this so… of course this has caused a lot of tension which doesn’t help the stress I am under. I was adopted so there are no relatives who can relate to me.

I am at a loss and scared of the outcome of these tests.

I am confused and frustrated.

I feel like I have done what I can.

And most of all I seriously feel like my body is dying without me, and I am starting to be ok with this.

If anyone has answers or insight on any of those things please let me know.

Reading these boards have really started to refresh my hope. Thank you for reading this… long post.

Lyza

[AndreaB]

Lyza,

Welcome to the forum.

If you have been gluten free for 3 years (no wheat, rye, barley, oats, spelt) then the biopsy would be pointless from a celiac point of view. If she is looking for other things that is would be different.

Enterolab can only detect antibodies for about 1 year. Unless you've gotten cc'd alot or have been gluten lite. You could do the gene test through enterolab and at least see what you're dealing with there.

BTW, if your blood tests came back positive for celiac, you have it and yes, you have been diagnosed.'

Tingles in your legs could be b12 so you may want to get that checked. It won't hurt to run through a battery of tests to see if anything else is going on.

I don't have many answers for you but hang in there and someone else will be along to help.

[kbtoyssni]

Welcome to the forum! It sounds like you've been through a lot, and I'm glad that you may have finally found some answers. I also agree with you that IBS is a "easy" diagnosis that should require futher investigation to find the root of the problem.

1. She wants to give me a biopsy now... I don’t see the point, I am not eating gluten. Could this mean she is testing for something else? Should I refuse and do Enterolab instead?

You have a positive blood test; therefore you have celiac. You do not need any further tests because it's pretty clear you have it. As for the biopsy - it is unlikely that it will show any damage since you've been gluten-free for three years already. And no matter what the result, you still have celiac. It is possible that your GI wants to look for something else, but you should ask her about that. I remember someone on her saying their GI found something else (ulcers maybe? I can't remember) when they did the scope, but I think that's pretty rare.

2. She is sending me to get an ultra sound of my abdomen... too look for "growths and rule out anything else it could be" (we all know what that means )

Hmmm, I'm sorry. I guess maybe get it done just in case? I don't know much about this...

3. She said if I don’t start feeling better or gaining weight she was going to put me on steroids?!?!!??! WTH?! Has anyone heard of this before??!?!?

Also not sure on this one. I would think it might be better to work on the root cause of the weight loss or failure to gain unless your weight it dangerously low, but that's just my thought and not based on any fact.

4. And, if all those don’t work she is going for the thyroid.

A lot of people on here have thyroid problems so this might be good to look into.

5. I have started having tingles in my legs... MS!?

Gosh, once again I'm not sure.

6. I have never been fully diagnosed as celiac… or have i?

Well, you do have the positive blood test. Most doctors are hesitant to make an official diagnosis based on a blood test, though (scope is still considered the gold standard). It's possible you "just" have gluten intolerance which I feel is the same thing as celiac, just not as advanced in the damage done to your body. Either way you still need to be on a gluten-free diet. I diagnosed myself based on positive dietary response, and I always tell people I have celiac.

7. Is there something they aren’t telling me?

I don't think so. Sounds like a typical GI experience to me. A GI who is slightly out of touch with the realities of celiac and still working off an outdated definition of the disease. I say stick to the diet. And don't let them force you into any testing you don't want to do.

My mom rolls her eyes at me when i tell her that there is no point for the biopsy now. She says to "trust the doctor and stop reading the internet"

You might want to get her a book like Dangerous Grains to read. Books don't have the same stigma the internet has about truthfulness of information. I would also still be very sick if it weren't for an internet friend on a message board mentioning she had celiac one day. If I hadn't heard of it years ago, I probably never would have figured out my problem.

Good luck and please post again if you have any more questions.

[Anne AMP]

I am new also to this forum also and can tell you that the advice I get here is a wonderful thing. My docs don't have a clue. Without this message board I would never have known what was wrong with me. When I asked my doc about brain fog and weakness and back pain along with my abdominal pain and D he replied "thats strange". Because of the wonderful people here, I was able to understand what was going on and get some real help.

[rinne]

Hi Lyza and welcome.

It is really great to hear how motivated you are to understand your health and to take care of yourself. I've heard IBS referred to as "I Be Stupid" as in the doctor is stupid but I wouldn't suggest that.

I've just been through two years of hell trying to figure out what was/is wrong with me and like you I came up with gluten free on my own. I have never had the endoscopy because I had been gluten free for five months when they wanted to do it and it seemed pointless.

What are the range of your symptoms? You mention tingling, that could be from a B vitamin deficiency common to Celiacs or it could be Lyme disease which is what I was just diagnosed with in addition to the gluten intolerance or Celiac that I have.

Trust your body, if it feels like it is "dying without you" it is communicating to you distress, that doesn't mean that you are going to die right away just that your body is alarmed and wants you to know that you need to pay attention to it.

One of the things I am suggesting to all my friends is to try the Himalayan salt, organic of course, just 1/4 teaspoon in a large glass of water once a day. It makes a difference, even just a little. One of our problems nutritionally is that conventional agriculture uses synthetic fertilizers which are lacking in minerals and so our produce is lacking in minerals and without minerals our bodies' cannot process vitamins. I had reached the point where I really didn't have much of a life, if I did one thing a day I felt I was accomplishing something, about three months ago I started to take Salt and Vitamin C and within four days I knew that the salt was nourishing me, I started to sleep better too.

I would do a lot of research on steroids before I ever took them, they are very hard on the body as in you can have to have a kidney transplant hard on the body. Very scary.

There is lots of support on this site, it is a great place to find help.

[georgie]

Lysa, The feet tingles could be low B12 so get that checked. Its just a blood test. Low Thyroid can go with Celiac quite often. Make sure that Antibodies are tested as well as TSH, free T3, free T4.

I am not sure about the other questions. Hope you feel better soon. I am new too, and its all a bit scary and thank goodnes this Forum is here to explain things. I have Hashis Thyroid, low B12, and probably Celiac although I haven't had a biopsy and my blood test was negative.

[debmidge]

Lyza

Your doctor sounds like he/she has a very good plan to diagnose you...perhaps his/her thinking is that yes, you have celiac, but let's make sure that there isn't something else lurking about.

My husband went to a lot of doctors from the onset of his illness and none of them were aggressive like yours is and had they been he would have been diagnosed a lot earlier with celiac and his other ailments.

My advice: go with the biopsy and the other testing and rest in the knowledge that you have a thorough doctor. Not many of us can/could have said that.

There's a place for steriods; I've taken them on short term (2 weeks for an injury and they work). Perhaps doctor wants to place you on short term also, which isn' a big deal. I know people who take them for months then stop; these people have asthma and must take them during winter to help them from developing bronchitis. When the harsh part of winter is over, the patient stops taking the steriod. It keeps them out of the hospital and keeps them from needed oxygen tanks/machines. My sister is one of these people. The steriod stops inflammation in its tracks and stops the cycle of inflammation and pain for good. Your Dr. could be thinking along these lines. This is another medication they should have given my husband if the doctors were astute enough.

Debbie

[aikiducky]

You mention that you were glutened a while ago, how long ago was that?

It can take weeks to recover especially if it's a thorough glutening, so if it was very recently I would first wait and see. Eat naturally gluten free foods like fruit, veg and meat and fish, that way you can be sure you don't gluten yourself again.

The tests can sound scary but it might not be a bad idea to check that there isn't anything else going on. I'm not a doctor but to me it sounds like you should stay gluten free regardless of what they might say now, but of course it is possible to have some other condition on top of celiac, so why not let them check?

While they're runninhg tests it would be a good idea to check for vitamin deficiencies, see how your thyroid is doing etc.

I hope you'll start feeling better soon in any case.

Pauliina

[nikki-uk]

Hi Lyza Jay,

I'm sorry you are feeling so rough.

I'm in the UK so I know our GI docs work slightly different to the ones in the US regarding celiac disease but I thought I'd add my thoughts.

If you've been gluten-free for 3 yrs I would guess that your doc wants to do biopsies to rule out any other conditions/to see if your villi have healed at all.

My hubby was dx 2 yrs ago and didn't seem to be responding to the gluten-free diet - a further biopsy showed that his villi weren't healing despite being strictly G.F.

He was also seriously underweight and like you suffering from apparent neuropathy (numbness/tingling burning in his legs and feet.

The doc decided to put him on a course of steroids - he said sometimes if you have quite alot of damage due to celiac disease (and my hubby was 40 yrs when dx) it can take steroids to 'kick start' the immune system into healing.

After the steroids my hubby improved alot - the tingling disappeared and he finally got an appetite & started to put on weight.

His doc thinks he was a 'slow' healer.

Anyway, I thought I'd share my hubby's experience - hope you feel better soon

[BRUMI1968]

The doc decided to put him on a course of steroids - he said sometimes if you have quite alot of damage due to celiac disease (and my hubby was 40 yrs when dx) it can take steroids to 'kick start' the immune system into healing.

After the steroids my hubby improved alot - the tingling disappeared and he finally got an appetite & started to put on weight.

His doc thinks he was a 'slow' healer.

Anyway, I thought I'd share my hubby's experience - hope you feel better soon

Hi all. I was on steroids (prednisone) for about six months probably, due to an autoimmune disease. The reason why prednisone works against autoimmune diseases is because IT BASICALLY SHUTS DOWN YOUR IMMUNE SYSTEM. It also causes your adrenal glands to stop working! When you go off prednisone, you have to be weaned slowly so that your adrenals will start producing again. For only a few, they never do.

I would advise that unless your doctor can give you a better reason than weight loss, that you stay away from steroids. Honestly, they stop your body from working in the two ways I mentioned above - and those two ways are paramount in getting better from Celiac. Most of us have adrenal problems, and we all have to work to get our immune systems up and running - from malnutrition.

Just my two cents. Obviously if you have something else going on - like you have some swelling that is preventing you from gaining weight or getting better, than steroids are an option. But so is turmeric and ginger and some other natural things.

Oh yeah, I gained 20 pounds on the steroids - mostly in my face. It took me years to lose that weight.

[lorka150]

the tingles in your legs, if they are not b12 derived, are probably not MS, unless you have other symptoms, too (esp. optic neuritis). celiacs can get a lot of MS mimiced symptoms. don't worry about that one - and if you are, request seeing an ompthamologist and get an MRI.

[Lyza Jay]

Hello again.

Thanks to everyone.

The doctor left a message on my answer machine saying my blood tests are normal and that my Celiac panels were in the negatives!?!? You gotta love the answer machine lab results, i have no clue what she means by that and apparently she cant find the test results from when I was diagnosed gluten intolerant in my records... (its a different doctor, but the same records... COME ON PEOPLE! ) So she has nothing to compare them to. So, Im guessing negative is good. But still, since she can't compare yet, she can't say whether or not I am Celiac!?!? Are you kidding me? Again, !!!

Also, I specifically asked her to test my B12, but on the answer machine she didnt mention that. Needless to say I am calling her constantly today to talk to her about all this.

I do have an ultrasound tomorrow and am praying that they dont find anything lurking in there... It will be cool to see my insides... ha ha. I just hope there is nothing inside of them.

I guess it does make sense to have the biopsy to see if my intestines are healing but wouldnt my blood test come out positive then? Or at least have malabsorbtion and low vitamins in my blood?

The steroids scare the shnikees out of me. I will not take them unless I feel it is the only thing left. I dont think I am as bad as the not healing intestine if my blood was fine. It would make sense if I was though.

Whoever mentioned the tumeric and ginger... I put mustard on everything. I carry it in my purse so when i go out I can put it on salads or ... anything! But, it has tumeric in it, Im not sure how much but I am going to look into this. I also love ginger. Maybe ill try to find and eat more of it.

This disease drives me nuts... It sounds so easy to cure, you eat gluten free, no meds etc. But, it has so many elements and side effects that its so hard to pinpoint everything. Symptoms of MS from gluten? Why isnt this well known around the world? Why are people afraid to live without bread?!?! This drives me NUTS!!! Ok...well, I erased the rest of my "venting" but yeah. It makes me go crazy!

Im also finding that us Celiacs are so much more "in tune" with our bodies.

There was a time when I lived in the Islands that I had never felt more healthy. Im going to try and think back to what my diet was there (because it wasnt much, but at the same time all natural and just the right amount) and maybe try to eat like that again. Ill let you guys know if you are interested.

I really appreciate everyones help in here. I feel really comfortable just to ramble (obviously) because you know what I feel like and what I am going through. If anything it is so theraputic. I really feel like I am not alone anymore and I can fight this. Thank you.

[nikki-uk]

Just to add if you have been gluten-free for a while your blood tests would come back negative because when you stop eating gluten you stop producing antibodies to it.

To gain a 'positive' blood test would require you to go back to eating gluten for around 6 weeks or more- eating 4 slices of bread (or the equivilant)

[Gene in Tucson DX 11-2004]

I guess it does make sense to have the biopsy to see if my intestines are healing but wouldnt my blood test come out positive then? Or at least have malabsorbtion and low vitamins in my blood?

The steroids scare the shnikees out of me. I will not take them unless I feel it is the only thing left. I dont think I am as bad as the not healing intestine if my blood was fine. It would make sense if I was though.

There is a condition known as refractory sprue, which means that the intestinal villi don't heal even if you have been a gluten free diet. Here's a little bit about it from American Family Physician (Open Original Shared Link):

REFRACTORY SPRUE

In patients with refractory sprue, gastrointestinal tract inflammation continues despite maintenance of a gluten-free diet. Dietary noncompliance is the most common reason for persistent inflammation; however, coexistent conditions such as hyperthyroidism and collagenous colitis should also be considered.

Patients who are truly refractory to dietary measures may have cryptic lymphoma of (bowel) intraepithelial lymphocytes. All diet-refractory patients should be evaluated by a gastroenterologist with expertise in the management of celiac disease. Corticosteroids and immunosuppressant drugs have been used to treat refractory sprue, but data on their effectiveness are sparse.

Intestinal strictures and bowel obstruction may develop in patients with refractory sprue or celiac disease that has been untreated over a long period.

There's a much longer article at Celiac.com (https://www.celiac.com/st_prod.html?p_prodid=877). Read it, it's a lot more optimistic.

If you've been gluten free for three years (and have the blood test to prove it) and you're still not feeling well , are under weight and show symptoms of malabsorption it sounds like your doctor is reasonable in checking for this. Too bad they don't communicate better. I would suggest trying to learn as much as possible an go back to the doctor prepared to discuss your test results and options for treatment. And hang in there...

[happygirl]

Welcome to the board!

Just wanted to add that some Celiacs are IgA deficient, which means that this test will not be reliable for them. Please call and request a copy of your labs, and type them up and we'll help you figure them out. Don't settle for having them read it to you---you need a copy.

We'll work through this!

[lorka150]

Welcome to the board!

Just wanted to add that some Celiacs are IgA deficient, which means that this test will not be reliable for them. Please call and request a copy of your labs, and type them up and we'll help you figure them out. Don't settle for having them read it to you---you need a copy.

We'll work through this!

happygirl, your post caught my eye - what test? the bloodwork? (sorry, with all the others, i'm just a little confused). hope you can help!

[happygirl]

Yes, the bloodwork. the IgA antibody is one of the tests that they usually include in the Celiac panel.

by the way, if you had positive blood work before, you went gluten free, and now it is negative---that is a good sign. it hypothetically means that you are healing. so being in normal ranges while gluten free IS the goal. but, if you are having trouble, many doctors like to check to make sure you have healed.

[corinne]

As a few people have said, I would check why your doctor wants to do biopsy. He may be able to find other similar conditions through biopsy. My mother is celiac and I had very similar symptoms (diarrhea, weight loss, cramps etc), but through a biopsy, the doctor was able to determine that I have collagenous colitis not celiac (collagenous colitis is one type of refractory sprue). A gluten free diet helps this type of colitis. There are several conditions which mimic celiac and a biopsy can help diagnose some of these.

[AZKat]

Hi Liza Jay,

I am new to the forum so am not as knowledgeable as many here. But I think it would be wise to let the doctor rule out anything else with the ultrasound and perhaps a biopsy.

One thing I thought I would mention...you say you have been recently glutened and are losing weight. I was recently diagnosed with gluten sensitivity and casein (dairy) sensitivity by enterolab, and the nurse told me that the casein sensitivity often goes along with the gluten sensitivity. So if your doctor doesn't find a cause, you might want to consider a casein test from enterolab. It can cause similar symptoms and damage to gluten if you are sensistive is my understanding. Since your bloodwork shows the gluten numbers have dropped way down, maybe it is a reaction to casein or something else?

[Lyza Jay]

Hello again everyone.

Still not well and eating the BRA diet for the next two days to try and soothe my insides. (As opposed to the BRAT diet since I cant eat Toast. So only Bananas Rice and Applesauce.)

I went in for my Ultrasound and should get results this week. I asked my doctor for a copy of my blood results and she "forgot to leave them at the front desk and had left for the day"... great. She also forgot to test my B12 which i specifically asked for... this is going reeeaaallly well. As soon as i recieve those I will post them. Some of my blood tests I can get online...such as my Iron and RBCs and those sorts. I feel like my iron is low but she said its still in the normal range....

I asked her about the Biopsy. She wants to make sure I am healing or healed. Although they never did the biopsy in the past, so I dont know what they will be comparing it too. I dont know why she isnt going the other direction at the same time... is that something I should request? Also, maybe they will find out it is something else like someone said in one of the replies or a different type of Celiac Sprue as well.

Im really thinking about doing Enterolab. The only thing keeping me back is $$. Maybe an early christmas present from the parents?!?!? hah. I think its a good plan.

Ok, the rice cooker just went off. Thats my que for breakfast.

[happygirl]

Lyza,

I know this is so frustrating for you! Doctors often just don't "get it"....and this is all so overwhelming when you just want to be healthy and move on. Just remember you are your own best advocate...and your only advocate sometimes.

I highly recommend a recently published book by a Celiac expert at Columbia University, Dr. Peter Green, called "Celiac Disease: A hidden epidemic"

Let us know what else we can do...hang in there.

Laura

[Lyza Jay]

Ok, an update.

I have my "positive" blood tests and my "negative" ones, but they are measured differently.

Let me know if any of you understand this.

POSTIVE RESULTS Feb 2004

IgA- 10

<20 -negative

20-30 weak positive

>30 Moderate to strong Positive

---sooo... this was negative

IgG- 70

<24 -negative

24-30 - weak positive

> 30 strong positive

--- this is the only positive in the panel that I had

NEGATIVE RESULTS Oct 2006 (after being gluten free since the first one)

IgA- 3

<11 - negative

11-17 weak positive

>17 positive

---- again, negative

IgG - 4

<11 - negative

11-17 weak positive

>17 positive

--- this time its negative.

So did i ever really have Celiac? I dont know why only one thing was positive and not the other.

I did go in for my endoscopy today. They didnt find anything but redness in my stomach that they are testing to see if it is a parasite or bacteria or just in flammed...etc. I get results from the biopsies that they took next week. im still groggy from the procedure.

Do these blood tests make sense to anyone?

Does this ever end?

thanks everyone.

[Fiddle-Faddle]

Hi Lyza, welcome to the board!

I just wanted to add that leg tingles could be purely mechanical--if something is pressing on your sciatic nerve, that could cause either pain or tingling in the legs. A good chiropractor can adjust your spine or loosen a tight muscle that might be causing this (but beware, there are useless and even bad chiropractors out there, too ).

My IgG was also the only thing really high. I'm not wasting time, energy, or $ bouncing around from doctor to doctor any more. The diet works well for me; as long as it does, I am assuming that's all I need. Hope I'm not wrong.

Great advice from all the other posts!

[Terch]

Hi,

I just wanted to say sorry that you are going through a bad time again. I also wanted to say that knowledge is power and that it can't hurt to have a doctor that is thorough with the testing. If you have celiac it doesn't mean that you can't have any other medical problem or gi problem. Very often steriods are used when Doctors suspect Crohns or Colitis so that may be what she is looking for. As for the tingling I would say that B12 is something you should look into.

I hope that this helps, it's scary when your body betrays you this way but I firmly believe that your body's natural state is to be well and you must do everything in your power to help that.

Hope you feel better soon.

[happygirl]

from what i read on your most recent posting of your results, yes they make sense.

your first one (eating gluten, i assume) .... you had some indications of Celiac. Now, I can't explain why we don't all test positive on all...or why some people are positive on some and not on the others, etc.

your second one (not eating gluten)....you numbers decreased. that is a good sign. Think of it this way: if you have diabetes, your blood sugar tests are high. If you get your insulin etc under control, your blood sugar levels level out. So, if you test your blood again, it would be "normal." This doesn't mean that you don't have diabetes anymore...it just means that it is being controlled. The Celiac bloodwork is the same way...they blood tests are positive because they are antibodies that are being produced in response to gluten being in the diet....it is not a static marker, like a gene (which is always there!), but instead is fluid, and can change.

My main question is why your doctor is NOT running the full, correct panel of blood tests though. These are the least specific for Celiac...doesn't mean that it isn't right, but great advances have been made and your doctor is not running the full panel. You doctor is not doing the correct diagnostic test, period. However, now that you are gluten free, no matter what blood test is run, a "negative" will not be truly indicative if you have Celiac or not.

Open Original Shared Link ... this is the list of the correct tests that need to be run. It is from Dr. Alessio Fasano, a leading EXPERT in Celiac. You either need to get your doctor to learn about Celiac or get a new doctor who actually reads about Celiac.