Not Sure What To Think At This Point

[Lilian30]

Hi,

 

I’m new here and not really sure what I have at this point.

 

Just as a background, I have ulcerative colitis (for close to 4 years now) and for the past year I’ve been treated with some pretty powerful immunosuppressants.

 

Several months ago I started having bouts of severe nausea and vomiting that, over time, became more and more frequent. After a while it started being accompanied by fatigue, anxiety, depression and pain in all kinds of weird places.

 

At first I thought it might be related to the meds and I asked for them to be replaced (replacing one powerful immunosuppressant with another, slightly less powerful, one). It seemed to help slightly in the sense that I became less prone to throwing up but the nausea and other symptoms still remained.

 

I tried tweaking my diet in every way possible for several months and nothing seemed to help. Last month I decided to go gluten free and (at least for the most part) it seems to have caused a drastic change. Most days I feel no nausea, no fatigue, no stress, no physical pain, no anxiety and no depression. However, there are still days in which I suddenly do start feeling nausea and fatigue and even start throwing up again and this is despite the fact that I’ve been extremely careful (reading all the labels and avoiding anything that may contain even trace amounts of gluten and even things that don’t say that but still look “suspicious” to me, ingredient-wise). I’ve also been avoiding lactose for the past couple of weeks because I’ve noticed that dairy seems to nauseate me too. So I’m not really sure what to think right now. I *think* that my diet is 100% gluten free but every so often something will nauseate me and I have no idea what it was or where that came from or how to figure it out.

 

Anyway, from everything I’ve read, all this sounds a lot like celiac (my brother has celiac incidentally) but last week I had the blood test done and today I asked my doctor about the results and apparently they came back negative [incidentally, I should point out btw that I’d been gluten free for 3 weeks before getting the test done (which my doctor told me to do)… and I read in several places that you’re NOT supposed to go gluten free before getting tested but… again… my doctor told me to do it that way…].

 

So… assuming my doctor isn’t a complete idiot (and admittedly he might be) I’m feeling a bit confused right now about all this. Another reason for my confusion is that sometimes even products that are labeled gluten free, from respectable gluten free food providers, will make me a little nauseous. Could it be that my digestive tract is just still recovering? 

[mamaw]

First  off,  find a  new  doctor, no doctor  who understands  celiac  disease  would  have a patient go off  gluten  before   testing so  yes  , maybe  idiot  is a correct  word  !  That  was  a waste  of  time  & blood & money for  him  to  do  that.....

There  could  be  a  good  chance  you could  be  celiac  or  ncgs  with  a  sibling  already  dx'd....it  is like  a  crap  shoot  some  siblings  are  okay  others  not....

If  you area  person  who needs  the  doctor  seal of approval for going gluten-free  then start  eating  all the  gluten  you can &  re-test after a few  months... I  have  seen  were  some  eat  a  couple  slices  of  bread  for  a few weeks  then  re-test  , only to get  a  negative  again. But  when they  dive into  all the gluten  they  can eat  & re-test  the  results change  to celiac.... you make the  choice....

And  you stated  for the most  part you you were  gluten-free  .... so  that  doesn't  count  for  anything  either  except  it  gave  you  a  hint  to your  piece  of  the health puzzle....

Healing time  for  a  celiac  varies  greatly, some  see  instant  relief  others  it  can take  a year , two  or  even  three some  never  find  a  total relief...(  those  are  rare) but  it happens....

Either  way you decide  to handle  your  issues  whether  to   eat  gluten  & re-test  or  just  be gluten-free   & forget  about  more  testing  is  your  decision to make.....if  you choose  the gluten-free  lifestyle with or  without a dx's  do it  24/7 , 365 days a  year   at  100%.... and  remember  that  CC  is  a  bigger  when it  comes to being  100%...

 I  think  of  this  disease  as  a lifestyle  change  & not just  a  diet  change.....

Good Luck  with  either  decision you make....

[linda-v02]

    My rheumatologist tested me for Celiac but before doing so he explained that it is a very sensitive test and that if you have not eaten anything that isn't causing inflammation at the moment it would probably come out negative. I, like you, am so careful not to eat anything that might aggravate my symptoms even more. I started out with gastro intestinal sensitivies that 10 years ago they called IBS. Just 3 years ago they determined I had Ankylosing Spondylitis, today I think this is much more than either for those two diseases, because I also suffer from severe fatigue, my stomach gets upset with everything! I don't do lactose, anything with wheat or too much fiber,  anything with too much sugar or deep fried.

     Although doctors can't be sure which came first. I can completely relate and have all of the symptoms that Celicac's complain about, but my test for Celiac came back negative. Your doctor is not dumb, the test is just not that good of diagnosing the disease consistently but it is all they have. Oddly what works well for my stomach symptoms is flax seed oil and black tea. The flax seed oil was a lifesaver.

[ravenwoodglass]

Welcome to the board. You already got some good advice and I would just like to add that you should get copies of the tests your doctor ran.  You need to know what tests he did as some doctors will only run one or two. Some will also say the test is negative if the results are a low positive or if only one of the tests is positive but the rest are negative. Some will also skip the total IGA which is an important test to run.

I also wonder if the drug you are on might impact testing. Maybe ask the prescribing doctor about that possibility. 

IMHO your chances of having celiac are likely pretty high since you have a sibling that is diagnosed. It does sound like the diet is working for you. Since your doctor can see your improvement he might even give you an official diagnosis based on symptom resolve and a diagnosed 1st degree relative. If that is something you feel you need. 

[nvsmom]

Ravenwoodglass made a very good point, steroids can (and often do) cause false negative celiac tests.  Since immunosuppressants and steriods are used to treat the rare few who have refractory sprue (celiac), I wouldn't be surprised if your meds could cause a false negative test.

 

Being gluten-free for 3 weeks could also cause a false negative in some cases (depending on how quickly your immune system calms down.  The tests are most accurate if you have been consuming gluten daily in the 2-3 months prior to testing. The longer a celiac is gluten-free, the more likely they are to get a negative test - almost all of us get a negative test eventually if we stay gluten-free.

 

It can take months to years for a celiac to recover. Some symptoms will improve immediately but I would guess that most celiacs take about a year to get well; I'm over two years gluten-free and I still consider myself to be in recovery.  Those first few months gluten-free will have a LOT of ups and downs.  Symptoms may improve and then deteriorate to worse than before you went gluten-free only to improve again in a few weeks. It is possible you were glutened but if it is a gluten-free product, it is is more likely that you are not healed and another food bothered you. 

 

The most common irritating food for a celiac is milk. About half of all celiacs are lactose intolerant until they are recovered at which time some regain the ability to handle milk.  A fair number of celiacs are also bothered by corn, soy, nightshades, and even eggs, peanuts and sugar.  Perhaps try keeping a food and symptom journal while you are gluten-free so you can keep track of how the diet is affecting you and discover what other foods bother you.  Keep in mind that a food sensitivity reaction can take minutes to days to appear, and that is where the journal will come in handy.

 

Welcome to the board.  

[Lilian30]

Thanks a lot for all the great replies and all the great advice .

 

I suppose I don’t really need written validation, I was just extremely frustrated yesterday by the idea that I might have missed the opportunity to get it (because there’s no way I’m going to subject myself to a month of eating gluten just so it can be official).

 

It might sound silly but I don’t think I would have been anywhere near as upset about getting a negative result if it weren’t for the attitude of my therapist. The other week I told her about another problem I’ve been having in my ear lately and she said “first the celiac and now this, are you sure you’re not turning into a hypochondriac? You haven’t mentioned the gluten-free diet in a while btw, have you decided to come off it already?” and I was completely in shock. The need for validation and the need to be believed are both issues for me and she of all people ought to know that… and yet she has been surprisingly bad at being supportive when it comes to celiac. Normally I don’t like complaining at length about my medical problems to the people around me so she’s been my main sounding board about all this… but every time I tell her “I’ve been staying 100% gluten free but I still sometimes have symptoms” or “I don’t think this food had any gluten in it but it still nauseated me” she’ll always say “well in that case maybe your problem isn’t with gluten after all” or “well then you probably don’t have celiac” or “since when is sudden anxiety a symptom of celiac?”.  

 

I’ve read in different places that some people seem to have an attitude about celiac like they think it’s some kind of a fad or in some way imaginary or otherwise they have some kind of fixed, ignorant view of it and refuse to see anything passed that. When I read that I just figured “ok, ignorant people on the internet, what are you gonna do” but then I find myself faced with that IRL among the people who are supposed to be there for me. I thought that with the blood test results I’d finally have a written certificate with which she would take me seriously… because when she doesn’t take me seriously then it’s like the only shoulder I have to cry on is of someone who thinks my problems are made up or “exaggerated”, as she put it the other day. 

[notme]

if gluten is a problem for you, you can stop eating it, but you still have all the inflammation that takes awhile to go away.  nicole is right, keep a food journal to identify problem foods (not necessarily gluten, keep in mind) and you may have to lay off certain foods until you're healed enough to digest them.  you may want to try probiotice and/or digestive enzymes to help your body break down foods and help digestion.  

 

ALL my doctors missed the celiac dx, so don't feel alone.  many of us on this forum were misdiagnosed (i heard rumors that i had anorexia and/or bulimia....  thanks, dumb family) when i was finally diagnosed, i started to get better.  i am still having improvements and have no doubt that this was what was causing my symptoms <oh, and they gave me every pill you can imagine for the symptoms but never identified the cause of the symptoms.  ibs is a joke dx but i heard that and colitis almost every time i went to the doctor.  

 

welcome to the forum and i hope you feel better

[Lilian30]

Thanks a lot for the advice and the encouragement . It hadn’t occurred to me to try probiotics but it so happens that I have them readily available (from back when I was frantically trying to find anything that might help in any way ).

 

I guess I just have to keep in mind that just because I can’t digest certain foods now, doesn’t necessarily mean that I won’t be able to digest them ever again (not including gluten that is).

 

It’s also comforting to know that I’m not alone when it comes to having a clear (or at least official) answer. I’ll still try to keep an open mind and watch other types of food though.

 

I have to admit that sometimes the diet starts to get to me a bit. I keep trying to tell myself it’ll get better the more I figure out what’s safe to eat but whenever I end up having a bad reaction to something I thought was safe it kind of rattles me… 

[BlessedMommy]

You're not alone. I'm going on 5 years of being gluten free without a DX. I've gotten to the point where I really don't care what the label is, I just know that being gluten free is the only way for me to be a healthy symptom free functioning member of society. LOL! I would never even seriously consider a gluten challenge of any length--with the severity of my symptoms, the results would likely be devastating.

 

That said, if people can get a DX, I highly recommend it.

 

But if you know that gluten is a problem for you, you don't need any doctor's notes to avoid it. If you stay 100% gluten free all the time with no cheating, eventually most observant people will figure out that you mean business.

[Eddiethecat]

Lillian30, I'm new here also and totally empathize with you.  Based on everything I've experienced and read I believe I have celiac, (I did a gene test and do have the gene). Short story, after trying to figure out my symptoms and what was wrong with me I came across a list of symptoms for gluten intolerance and decided to try gluten-free to see if it made a difference.  It made a huge difference but at the time I didn't consider the possibility of celiac.  It was things that happened after going gluten-free (accidental glutening and reactions) that made me begin to suspect celiac.  So I had the gene test to rule in or out the possibility.  Since I have the gene now I want to know for sure but am at the same place where I have been gluten-free for a yr and my experiences when accidentally ingesting gluten have been bad enough that I don't want to do the challenge and be sick to take a test that may or may not even be accurate.

 

I did go see a Gastro doc, one that had good overall reviews.  I had a list of all my symptoms (that lessened or resolved after going gluten-free), a writeup (so I wouldn't forget anything ) about what I experienced and my gene test results.  At first I thought he gets it but after some more discussion, he dismissed the gene test (had it done through Entrolabs) suggested it might be SIBO and asked if I had any children.  I have one and he asked if there were any issues getting pregnant, I said no and he said that having issues was a sign of celiac (sounding like if I didn't have issues I couldn't have celiac) . Then had me schedule for colonoscopy and endoscopy.  I left feeling very frustrated. I had really wanted to sit and talk about all this with a doctor and the whole visit was maybe 15 min at the most.  I went home and looked up SIBO, and while it could be a possibility, there are 2 tests that could rule it out that are non invasive - yet he didn't bother to order them.  Also, I don't believe I had celiac at the time I had my daughter - (She is 14) I believe the onset started during the past 4-5 yrs (had a surgery and stress that may have triggered it). 

 

I found another Doctor that specializes in food allergies, eosinophilic esophagitis and celiac disease. I have an appt tomorrow so we will see what he has to say.  Over Thanksgiving I had a discussion with my family and they asked me why a diagnosis matters to me, if gluten-free makes me feel better and the symptoms go away then I should just say this is what I do to be healthy and leave it at that.  I guess I just feel like I need that confirmation that it's not in my head.  ( I know it's not but I can't shake that thought).