Advice Requested - Now Gluten Free, But No Diagnosis

[Jmg]

Hi all,

 

I'd really appreciate any advice members could offer.  I've realised only recently that a lot of different symptoms that I've experienced over 20 years or more may be connected.

 

In January, following a period of ill health I changed my diet, conforming to a large extent to the 'paleo' lifestyle, with no processed foods or grains. Although I wouldn't have classed my previous diet as unhealthy, within days this change had a remarkable affect on my mood and physical well being. 

 

I didn't fully join the dots until March. By that point I had my first beer and noticed a reaction over the next couple of days. I started to wonder if gluten may be an issue after finding this site and several others.  I appear to have many of the symptoms of celiac disease including: Seborrheic dermatitis, depression, joint pain, chest pain, abdominal cramps, swollen lymph nodes, malaise, psoriasis, urinary tract infection and some signs of malabsorbtion. I also have asthma (from 12) hayfever and allergic reaction to animals.

 

I've had various medication or tests concerning each of them and have moreobver for a long time had a feeling of unease as if something wasn't right. At no time however as a doctor made any connection between them. In February of this year I started to put the pieces together.  

 

I went to my doctor and he arranged a blood test. I'd been gluten free for 2 months and started eating gluten immediately.  I reacted within about a day and a half, gradually feeling worse, wit my skin issues the first visible signs.  I was only back on gluten for 6 days before taking the test. By then I felt dreadful.

 

I returned to the doctor and found the test was negative. I asked him if 6 days would've been long enough for the test to take effect. He said he thought so, given that I reacted so strongly, however I've since read that this isnt the case and I may have had a false negative. The Doctor admitted he didn't know much about celiac and offered to write me a referral if I could find a specialist who may be better placed to help. 

 

Today I'm gluten free and feeling better every day.  I've had two instances where I think I've eaten gluten. Once in a soup, which I found had included a gluten containing seasoning. That brought the dermatitis back on scalp and chest. I appear to have reacted again since then, but have not nailed down the food. 

 

My problem is whether I should pursue the diagnostic route or simply get on with enjoying my life gluten free. I've read stories here and elsewhere of how long and hard others have strove for a diagnosis.  I reacted very badly in just those 6 days back on gluten and the thought of doing this for months to get a diagnosis is not a pleasant one. I'm also worried about the damage I may have inadvertently done to myself with many years of eating gluten as I've had some or all of these symptoms for over 20 years (I'm 41 now). My life is so much better since I made this change and there's no treatment at the end other than eating the way I do now. On the other hand I have no objective proof and for all I know this improvement could just be a placebo effect. I just don't know whether to go down the medical route or just get on with life as a non diagnosed celiac?

 

Thank you for reading this and any advice you can offer.  

 

[NoGlutenCooties]

Hi Jmg and Welcome!

 

The question of whether to pursue testing is a personal one that really only you can answer for yourself.  All we can really do is give you some pros and cons - which it sounds like you've likely read already on other, similar threads.  Your doctor is wrong about the 6 days being enough to show up on the test (but at least he admitted he didn't know much about Celiac).  Once you've been gluten free and wish to do a gluten challenge for the purpose of testing you need to eat the equivalent of 2 pieces of bread each day for 8 to 12 weeks for the blood test and at least 2 weeks for the biopsy (give or take - I've seen variations of these numbers).  It sounds like that would be very difficult for you to do.  So you have to ask yourself how important it is for you to have an official diagnosis.  Can you stay 100% gluten free without it? 

 

In my opinion... if you have symptom improvement on a gluten free diet and react to gluten when you accidentally ingest it then you know you have a problem with gluten.  It could be Celiac.  It could be non-Celiac Gluten Intolerance.  But the course of action for either is the same - a 100% gluten free diet.  No cheating.  No... "I'll just have a little bit".  100%.  For life. 

 

If after 6 months on a gluten free diet you still have symptoms of something being wrong then pursue those issues with a doctor.  (Unless you have symptoms of something potentially life threatening, in which case don't wait!)

 

Oh... and if you have children you'll want to get them tested.  Celiac is genetic.  If one of them test positive you can be reasonably confident that you have it too.

[BlessedMommy]

I'd echo the advice that it's basically a personal choice. I would personally give the caveat though that you need to be very, very careful about reintroducing gluten after eliminating it, if you decide to go the gluten challenge route. (see my sig for my experience!)

[Jmg]

Thank you for your replies

 

NoGlutenCooties, you're quite right. It's because I've established to my own satisfaction that I don't get on with gluten that I  think I'll be quite happy to stay on the gluten free diet regardless of diagnosis. So the only real gains I can see are that of certainty, perhaps identifying other risk factors and help in persuading family members to consider a test themselves. All of which are important, but so is feeling well, happy, full of energy etc. It feels like I've come out of a long tunnel. hence the thought of going back is freaking me out a bit!

 

I'd echo the advice that it's basically a personal choice. I would personally give the caveat though that you need to be very, very careful about reintroducing gluten after eliminating it, if you decide to go the gluten challenge route. (see my sig for my experience!)

 

That's put my reaction into perspective!  It's the thought that if I do decide to get tested I'm better off doing it sooner rather than later which is giving me pause for thought.  I'm going to try and find a medical practitioner to discuss this with, but at the moment am leaning towards a self diagnosis and adoption of gluten free for life.  

 

Thanks again for your responses!

 

Matt

[skelly247]

I was in the same boat as you are now, I went "paleo" and felt 100x better than I had.  I went out to eat at a steakhouse with friends about 2 months after going paleo and someone ordered one of those delicious deep fried battered onions and I had some.  Half way through the meal I started to not feel so good and then I had to find a bench to curl up on when we were walking around a shopping center afterwords because my stomach was hurting so much.  I tried again a few weeks later with chicken tenders at a restaurant, same deal.  I was also worried it was a placebo thing (my fiance offered to put flour in my food to see if I would have a reaction without noticing) but I opted to go the blood test route just to appease my mind.  I was borderline positive (with IgA deficiency) after being gluten free for a few months and only doing a 1.5 week gluten challenge as well as severely deficient in a few vitamins.  That was enough for me, I opted to skip the endoscopy.  It's really a personal choice whether the tests are worth it.  Personally, I wanted to know so that I could actually tell people my problem is "x" and this is what I have to do to fix it.

[nvsmom]

Welcome to the board, Matt.

 

I agree with the others - all good advice. Testing can be helpful but not everyone can make it through the 8-12 week gluten challenge; 2-3 months of making yourself sick is a looonnnnggg time... reminds me of my pregnancies.  LOL

 

Either way, you know treatment for celiac disease and for non-celiac gluten intolerance (NCGI) is going 100% gluten-free for life. There is not a lot of difference between the two besides intestinal damage, and both usually respond well to going gluten-free.  Good luck with whatever you decide to do.

[Jmg]

I was also worried it was a placebo thing (my fiance offered to put flour in my food to see if I would have a reaction without noticing) but I opted to go the blood test route just to appease my mind.

 

I also had the worry that this was all in my mind. However a few weeks ago I reacted very strongly to something which I believed had no gluten in it.  When I reacted and investigated it turned out that a seasoning mix had been used which had gluten.  It's not 100% proof of course, but it did reinforce what I'd already been thinking.

 

Welcome to the board, Matt.

 

I agree with the others - all good advice. Testing can be helpful but not everyone can make it through the 8-12 week gluten challenge; 2-3 months of making yourself sick is a looonnnnggg time... reminds me of my pregnancies.  LOL 

 

 

I'd be prepared to do it if I could find a doctor who demonstrates some understanding of this. Unfortunately my recent experience hasn't been good in that regard. I'm also, for the want of a better word, angry, that over so many years and so many symptoms not one doctor has ever connected  the individual complaint I've presented with an underlying condition. I guess I don't have much faith in the medical community right now  Indeed I wish I'd asked for the full results of the blood test as I dont even know which antibodies they screened for or what the results were. 

 

Thanks to you both for your advice and good wishes. I've reached out to someone with celiac in my local area and I'm going to talk to them and see if they have any advice on living with this or finding a nearby doctor who could help me with testing.  Until then however I'm staying gluten free and I may yet decide to forgo the diagnostic route and self diagnose. Not something I would ever have contemplated before, but having been a docile adherent of the medical process for all my life, I'm now a lot more sceptical about how I've been treated, the various medications which have been prescribed to me and the lack of any desire on medical practitioners to look for underlying causes. 

[Jmg]

I've been given the name of a specialist and have asked my local doctor for a referral.  I'll wait till I've spoken to him before I make any further decisions, so still gluten free for now.

 

I am however noticing that I'm now much more sensitive to foods than before I took the gluten out of my diet. I've had a couple of odd reactions to ostensibly gluten free foods. My stomach is noisy, I had some 'safe' chicken at a bbq and reacted very quickly, within 20 minutes or so of eating. Had bad stomach pains, I don't think this was happening before like this and it's left me worried over just how sensitive I may wind up and more importantly just how brutal a gluten challenge for the sake of testing may turn out to be. 

[Jmg]

Hello again. To recap after removing gluten from diet for 2 months and seeing a profound impact I had a negative test after 6 (painful) days consuming gluten. I've now obtained a copy of my results and I'd appreciate any insight you could share, as I'm none the wiser!  I don't seem to have the spread of figures I've seen posted here, although I'm in the UK so appreciate some of the following may be related to how we set out our tests. 

 

My first issue is that the Dr has put down comments that are completely unrelated to what I told him. He's sent me for a 'Allergy Total/Specific IgE report' and indicated that food allergies are the primary focus. He's not described my skin issues accurately either. It's like he wasn't listening

 

On to the results:

 

ALLERGY Total/Specific igE report

Immunoglobulin E level (XE2bT) - Above range 26.6 ku/L (<15.0) - Above high reference limit

Food mix RAST test (XaldN) <0.10 ku/L (<.35) Food panel includes codfish, Egg white, Milk, Peanut, Soybean and Wheat

Autoantibody level (XaEWg) 

Biochemical test (X77W9)    - Negative Assay includes antibodies for igA Endomysial Anti-Gliadin Anti-tTG Anti-Reticulin

Immunoglobulin A                - 3.14 g/l (0.4-3.5)

 

This is all the test shows, no breakdown for tTG levels etc?

 

I can't tell much from this, can anyone? I'm guessing I can rule out wheat allergy from the food panel? I don't know what the abnormal IgE reading means, it doesn't seem to concern my Dr...

[GFinDC]

Hi JMG,

 

Here's a list of the tests for blood antibodies for celiac disease.

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

 

It doesn't look like you got all those tests done.

 

Have you read about DH (dermatitis herpetiformis)?  It is a skin rash associated with celiac disease.  They test for it differently.  They take a biopsy sample of skin next to the lesion and check it for antibodies.  There is a section of the forum dedicated to DH that has more info.

[Jmg]

Thanks GFinDC. It's only from reading this forum that I realised that maybe the test hadn't covered all the bases.  It may be because the UK labs do things differently, but I can't tell because the report doesn't seem to break it down properly.

 

I have read about DH. I have had a rash on my chest off and on for over 20 yrs which could be that, Dr's have given me various creams and antibiotics but they never seemed to work. It's got lot better since I changed my diet, but hasn't gone completely. 

 

I've asked to be referred to a specialist as I don't think my regular dr's have much understanding of this...

[nvsmom]

 

ALLERGY Total/Specific igE report

Immunoglobulin E level (XE2bT) - Above range 26.6 ku/L (<15.0) - Above high reference limit

Food mix RAST test (XaldN) <0.10 ku/L (<.35) Food panel includes codfish, Egg white, Milk, Peanut, Soybean and Wheat

Autoantibody level (XaEWg) 

Biochemical test (X77W9)    - Negative Assay includes antibodies for igA Endomysial Anti-Gliadin Anti-tTG Anti-Reticulin

Immunoglobulin A                - 3.14 g/l (0.4-3.5)

 

.

 

It looks like the X77W9 test tested for most of the celia tests, but to me it looks like it might have just been the IgA based ones (tTG IgA, EMA IgA, etc).  They missed the new DGP tests but added the old anti-reticulin test - that one isn't seen often anymore.

 

If possible, it could be helpfulto have the IgG version of those tests run. A minority of celoacs are positive in the IgG based tests (tTG IgG, DGP IgG, etc) but not in the IgA based ones - even if they are not IgA deficient (your IgA levels are fine).

 

Retesting after a longer gluten challenge might be helpful too - if its not too painful that is. Some people's antibody levels can drop to normal in two months gluten-free where as others may take much longer. You may be one whose numbers normalize quickly.

 

I agree that testing the area beside the rash may be the way to go. For some celiacs, the insanely itchy rash is their only symptom.

 

It's also possible that you have non-celiac gluten intolerance (NCGI) in which case the blood tests will be negative (except for possibly the AGA ones but it's not widely accepted that it can show NCGI and they are not that sensitive).

 

Good luck finding answers! I know it can be a frustrating process.

[Jmg]

Thank you once again! This:

 

It looks like the X77W9 test tested for most of the celia tests, but to me it looks like it might have just been the IgA based ones (tTG IgA, EMA IgA, etc).  They missed the new DGP tests but added the old anti-reticulin test - that one isn't seen often anymore.

 

If possible, it could be helpfulto have the IgG version of those tests run. A minority of celoacs are positive in the IgG based tests (tTG IgG, DGP IgG, etc) but not in the IgA based ones - even if they are not IgA deficient (your IgA levels are fine).

 

is really helpful. 

 

I still don't know whether the health system here can offer the more sophisticated test, but it seems as if cyrex labs are available privately: Open Original Shared Link - If I do another gluten challenge I may pay for one of these lab tests at the same time for y own peace of mind, because at least I won't have to put myself through it a third time. Although if they're not being used for diagnostic purposes over here it may not help me in any subsequent referral.

 

I've found the entire process of getting good information and advice difficult so thanks again to you and the other members of this board for sharing your hard won experience. Your help is very much appreciated. 

 

Matt

[Mi Samba]

I just heard on the " Katie " TV show that you have to have gluten in your system to test positive. Also this is not always accurate. It can come up negative and then you need a gastrointerologist to test you.

[nvsmom]

...I still don't know whether the health system here can offer the more sophisticated test, but it seems as if cyrex labs are available privately: Open Original Shared Link - If I do another gluten challenge I may pay for one of these lab tests at the same time for y own peace of mind, because at least I won't have to put myself through it a third time. Although if they're not being used for diagnostic purposes over here it may not help me in any subsequent referral.

...

 

I don't know much about private testing, but I do know it's available. Perhaps start a new thread asking about Cyrex labs or other labs available through the UK. I think there are a few around here who did private tests.

 

I did do a home Biocard test, which was a tTG IgA test. In Canada it's about $50, and it's basically the same ones the labs run except you don't get a number for a result -  just positive or negative (like a pregnancy test).

 

If you do do more testing, eat gluten for as long as possible prior to the test. 8-12 weeks is usually recommended.  The DGP and EMA tests are usually the first to revert back to normal. In some the tTG can linger positive longer (in both IgA and IgG based tests)

 

Best wishes.

[NoGlutenCooties]

I just heard on the " Katie " TV show that you have to have gluten in your system to test positive. Also this is not always accurate. It can come up negative and then you need a gastrointerologist to test you.

 

Just to clarify - it's not the gluten that must be in your system, but the antibodies.  And yes, false negatives do occur.  False positives are more uncommon.

[MEC]

JMG- I literally just joined this forum and went immediately to your post. I self- diagnosed a week ago and am 100% positive I have Celiac's and am not going to put myself through the tests. I'm sure some will disagree but in my research, although symptoms vary, Celiac's just fits for me!   I don't know about others but right now, I'm thrilled to be feeling better. I actually didn't know how crappy I felt until I cut out the glutens. I was just assuming that this was the 'new me' and just had to deal with it.

Here is my timeline leading me to conclude my diagnosis.

• My niece was diagnosed with celiac's at the age of 2.
• I had breast cancer 10 years ago followed by chemo and radiation (trauma to my body when disease was most likely triggered)
• Was in great shape my entire life never weighing more than 120 lbs. After Chemo/radiation, I blew up like a balloon- belly looks six months or more pregnant and just gained a ton of weight.
• Exhaustion- was extremely tired all winter to the point where I would wake up, put my son on the bus, and then go back to bed. 
• very low energy
• IBS
• foggy brain
• white spots on finger nails
• tingling in toes and fingers

After a week

• I have energy!!
• have a good night sleep and don't feel need to go back to sleep
• IBS- GONE
• bloating- this will take a while but it's noticeable in my face and I feel my stomach changing
• skin is softer
• hair is shinier
• I didn't know I had a 'foggy brain' until stopped the glutens. 
• dread the thought of having to 'gluten up' to be tested. Diagnosis to me is not necessary as I don't feel I need a doctor to tell me to change my diet which I am working on already! 

Wish me luck and good luck to you too in your decision to test or not. One last factor in me deciding to test or not- I'm 46 and don't have any biological children. We adopted our son after my cancer diagnosis. If I had a biological child, I would probably get tested.

[Jmg]

Thanks for the further responses.  I've had some good news, my local dr is referring me so I'll get to see a GI specialist. Depending on what they say I may try to complete a gluten challenge, not keen on the idea after my last experience but at least I may then know for sure and I'll be getting an expert view. 

 

MEC, thanks for sharing your story, it really struck a chord. Especially:

 

 I actually didn't know how crappy I felt until I cut out the glutens

 

I feel a different person than I was in January. It's uncanny.

[Jmg]

Hello again.

 

After starting to feel much better, putting on some weight and feeling even better than I had when first cutting out gluten I finally met the GE consultant today. The good news was that he was happy to send me for a endoscopy rather than a blood test, the bad news was that he suggested an 8-10 week gluten challenge, I'd been hoping for only 2 weeks for the endoscopy as some here have suggested.  

 

After my last experience I really don't think I could manage that long. We settled on 6 weeks, so I'm going to start consuming gluten again.  Frankly I'm dreading it, far from being excited about the food and drink I'm scared about just how this is going to affect me. Having been on an upward curve for months now and working so hard to avoid any slip ups I'm now going to be deliberately exposing myself. Seems crazy!

 

I'm now looking for any advice on how to get through the challenge with as little negative outcomes as possible. I'm going to continue with multivitamins, probiotics and a healthy diet. Should I re introduce gluten gradually, starting small and upping quantities or does that not really help? The consultant didn't give me any firm info on quantity of gluten to eat, just said the more the better....

[nvsmom]

For a biopsy, I usually see a gluten challenge of 2-4 weeks with the equivalent of 1-2 slices of bread per day.  Because you are going longer than that, I would ease into it a bit and start at 1 slice of bread or less for a few days.  I don't know if easing in will help but it might make it a slightly less of a shock to your system.  Just don't overdo it - some people eat toast for breakfast, buns for lunch, noodles for supper with baked goods for snacks - that would be a recipe for disaster.

 

Try eating your gluten in the evening so your day is not ruined (if you are the type who reacts quickly).  

 

Good luck.  I hope it isn't too bad for you.

[BlessedMommy]

I wouldn't say that more is better! I ate gluten with every meal for my gluten challenge and it was a total disaster. I would think that smaller amounts would increase the chance that you could actually finish the challenge.

[Jmg]

For a biopsy, I usually see a gluten challenge of 2-4 weeks with the equivalent of 1-2 slices of bread per day.  Because you are going longer than that, I would ease into it a bit and start at 1 slice of bread or less for a few days.  I don't know if easing in will help but it might make it a slightly less of a shock to your system.  Just don't overdo it - some people eat toast for breakfast, buns for lunch, noodles for supper with baked goods for snacks - that would be a recipe for disaster.

 

Try eating your gluten in the evening so your day is not ruined (if you are the type who reacts quickly).  

 

Good luck.  I hope it isn't too bad for you.

 

Thank you.  I'm going to just have a small amount for the first few days. Now started off with a small very slice of rye bread. 

 

 

I wouldn't say that more is better! I ate gluten with every meal for my gluten challenge and it was a total disaster. I would think that smaller amounts would increase the chance that you could actually finish the challenge.

 

 

I hope so, am hoping to make it through as would be awful to get near and not make it for the endoscopy. 

 

Thanks as always for your replies. I've found this board very helpful and appreciate the efforts that you and others put into it. 

[Jmg]

Few days in, have started slowly, the first sign I had was scalp being itchy, then came the anxiety (although it was difficult at first to pick up as I was anxious about doing this even when gluten-free ) now the horrible hollow depression feeling is beginning, sort of like an ache behind my eyes. Only positive is that I know now what causes it and that once this is over it should be gone.

 

I meant to make a list of all the foods I'll have one last time but at the moment even though I can now in theory eat anything I'm not really tempted by any gluten other than the 2 slices of bread I'm forcing down. I'd really adjusted to the new diet and feeling healthy. 

[BlessedMommy]

Good job, I hope that you can make it through. You either have celiac or NCGS, it's clear that gluten doesn't help you out any!

[StephanieL]

For a biopsy, I usually see a gluten challenge of 2-4 weeks with the equivalent of 1-2 slices of bread per day.  

A well respected Celiac expert recommended to us 6-8 weeks minimum for a challenge.