Just Exhausted. Advice: Should I Pursue An Official Diagnosis?

[ohiobob45]

Please let me know your thoughts - all opinions welcome (but please be gentle, I am feeling emotional!).

 

I'll try and keep the story short: mother has IBS and psoriasis. Never tested for celiac disease. Grandmother had severe osteoporosis, never tested for celiac disease. 

 

Me (age 39) : recurrent, worsening digestive issues, cramps, soreness, swelling, diarrhoea, endless gas and extensive bloating. Acne all my life. Eczema patches on my body. Keratosis pilaris on arms and thighs, diagnosed recently with a ventricular ectopic beat (benign) as suffering from increasingly bad skipped heart beats. Seven first trimester miscarriages (all investigations came up negative, including fetal testing), and two live births.

 

18 months ago I did a home coeliac test which came up positive. The test checked for IgA AND IgG antibodies. I requested a blood test at the doctors, but when I called to get my results I was told over the phone they were negative and the doctor's comment was "Normal, no action". (Note - my usual doctor was away and this was all done by a different doctor)

 

Last week, finally at my wits end with the bloating and pain, I requested a copy of those results so I could check the numbers myself.

 

I was low (out of range) for potassium and calcium. I had a high (way out of range) level of serum C reactive protein. IgA was just listed as "negative".

 

I went back to my usual doctor today and he said with my results that they should have at least repeated the test, or done further investigations. He said it was in all likelihood a false negative as the IgA test isn't always a reliable indicator.

 

In the UK they no longer do an IgA count, just a screen for it's presence at a certain level, so I know I could be IgA deficient.

 

The home test implies that I got a positive result for the IgG component, which would make sense as to why the "official" blood test was negative.

 

I've been through four miscarriages since I was told my official test was negative, and I have been so depressed and bloated and miserable for two years that I am just at the end of my strength.

 

6 days ago, in desperation, I stopped eating all gluten.

 

By day 4 my eczema had lost it's redness and stopped itching. My insomnia is almost gone. My mood has improved beyond belief, and my stomach - my fat, bloated, sore, painful stomach - has been flat for 6 days.

 

My doctor said today that we could request a biopsy, but that I would need to eat gluten.

 

I am so crushed and emotional about what I have been through, possibly needlessly. I am so sad that the doctor that reviewed my results didn't think that all the out of range numbers meant any follow up was needed despite the official "negative" for IgA.

 

I refused the biopsy today, I just feel that I want to be left alone to try to put my life back together.

 

But is this a mistake?

 

When people ask if I am coeliac, how can I explain all of this to them? Should I just persist in order to get a diagnosis? 

 

I just keep crying for all those babies I lost that may have just been because some stupid doctor somewhere thought that I didn't need any further attention.

 

What would you do? I don't ever want to touch gluten ever again after all this.

 

Sorry for the long rambling post. I just need some advice on what to do. I don't want people thinking it's "all in my head" or that I'm just jumping on the bandwagon, but equally, I don't want to subject my body to any more gluten given how much difference it's made in just a few short days.

 

I just feel exhausted and emotional over the whole thing :-(

 

[NoGlutenCooties]

Hi Fayejw and Welcome to the Forum - you've come to the right place!

 

First, I'm so sorry about what you've had to go through - unfortunately your story is a common one.  Take solice in knowing that you are not alone.  ((HUGS))

The question of whether or not to get tested is a personal one that only you can really answer.  But I can share my opinion... given the severity of your symptoms, if it were me, I think I would request a full Celiac panel of bloodwork and then that day go gluten free and stay 100% gluten free for life and never look back - regardless of what the results of the test turned out to be.  If after being gluten free for awhile you continue to have specific symptoms you can always continue to search for another possible cause for those particular symptoms - it is possible that not everything is due to Celiac.

 

As far as how to explain it to others... honestly, I wouldn't bother.  Just tell people you have Celiac.  It's really no one's business how you were diagnosed.  There are plenty of people who are self-diagnosed Celiac and they stay 100% gluten free for life, stay healthy, and don't worry about it.

 

The full Celiac panel includes the following:

• AGA (antigliadin antibodies)-IgA
• AGA-IgG
• tTG (anti-tissue transglutaminase)-IgA
• EMA (anti-endomysial antibodies)-IgA
• Total serum IgA

 

Good luck!

[powerofpositivethinking]

I wanted to add that the AGA tests are older and not as reliable, so ask for the deamidated gliadin peptide tests (DGP).  Request both DGP IGG and DGP IGA.  You can also request the TTG IGG version as well.  Good luck!

 

 

 

 

 

The full Celiac panel includes the following:

• AGA (antigliadin antibodies)-IgA
• AGA-IgG
• tTG (anti-tissue transglutaminase)-IgA
• EMA (anti-endomysial antibodies)-IgA
• Total serum IgA

 

Good luck!

[ohiobob45]

Thank you very much for the test info.

 

I am in the UK, so coeliac testing has a protocol on the NHS that all doctors follow - they don't do the panel above (I don't even know if you can request it? Can you?).

If you test negative to anti-tissue transglutnase and IgA is perceived to be normal (not low), then your only options are the biopsy (if the doctor will refer you) or to go private (very expensive).

 

I just don't think I have it in me any more to follow up on it. I don't want to eat any more gluten. Is that bad? I'm so worn down by it all and so tired of feeling like crap.

 

I'm just worried that a lack of an official diagnosis will make me somehow seem like a hypochondriac or something    

[BlessedMommy]

I'm so sorry for all that you've been through. I'm undiagnosed (but maintain a 100% gluten-free diet) and I think that it's best to get a DX while you can. Adding gluten back in later can be extremely difficult or impossible, if you ever want a DX later on.

 

Like the PP said though, it's a personal choice that only you can make.

 

Best of luck!

[mamaw]

sorry for  what  you have been  through,  rough  going.......You do  what you need to do to  get better ... Many of us have  made our  own dx's  and  never looked  back.... if  you are  a  person  who  goes  gluten-free    without  a  formal  dx's  , get  feeling  better  & then  start to  question  if  you  truly needed to go gluten-free  then by all means  ,,, eat gluten &  get  the testing  done  & out of the  way... If  you  don't  need  that  formal  piece  of  paper  &  get  better  &  stay  on the gluten-free  no  matter  what   then  go  gluten-free  now.......

You know  yourself  better  than  any doctor  so  the  choice  is yours.....and  honestly  I think  you  already have  your  answer....

Your  body is  already telling  you  it  feels, looks  better  being  gluten-free.....

 

Also  then we  have NCGS where the  elimination  of gluten  is  the only  way to test...

And  please never  care  what  another  person  thinks  ,  your  health is your  health....none  of  their  business....

blessings  & take  care.... life  is  fragile  , handle  with  care....

[NoGlutenCooties]

One other thing to consider... if they're willing to do the biopsy and you wouldn't have to wait long, you could go ahead with it and go gluten free as of today anyhow.  I was gluten free for 3 weeks before my biopsy and it still showed moderate to severe villi damage.  My doctor explained that going gluten free prior to biopsy is not ideal, but as long as you don't wait more than a few weeks then it should be fine.  The damage does not heal that quickly.

An additional benefit to getting the biopsy is that they could potentially catch something else that may be going on, aside from Celiac.

Keep in mind though - it is possible to have a negative biopsy and still have Celiac.  The inflammation is spotty and comes-and-goes, so it can be fairly easily missed.

[skelly247]

I am really similar to you. I went gluten free and felt amazing in under a week. I stayed gluten-free for multiple months and then went back on gluten for just over a week before my test (pasta for lunch and dinner every day to use up my pasta stores, so painful). My serum IgA was lower than it was supposed to be and my IgA tests were just barely negative as were my IgG tests.  That coupled with my vitamin deficiencies and symptoms going away upon gluten removal was enough for me to, at the very least, say that I have gluten issues that were causing malabsorption problems.  My friends and family know that I am borderline positive but they've seen what happens when I ingest gluten and they agree that I probably have celiac disease, especially with our family history of undiagnosed and potentially misdiagnosed GI problems and auto-immune issues.  For simplicity's sake, I just told my coworkers and anyone at restaurants that I have celiac disease because I will be sick if I eat anything that contains gluten, regaredless of if it is damaging my intestines or not (I have a really high insurance deductible and have had negative reactions to anesthesia so an endoscopy wasn't really an option for me).  In the end, you have to do what is best for you, if you think that you have celiac and are dedicated to living a true gluten free life, then there is no problem with you telling people you have celiac, as long as you don't go to restaurants and say you have celiac and then eat bread or croutons or something like that.... 

[ohiobob45]

I just wanted to thank all of you for your responses.

 

Now I've had a little time to process everything, and I've been gluten free for three weeks, I've decided an official diagnosis is not necessary.

 

I've just felt so much better for not eating gluten. Stomach pains all gone, eczema all gone, redness on my face has disappeared - it's been like a miracle.

 

It was a huge, huge thing for me, given everything I've been through, and how terrible I'd felt for so many years. But I can see that it doesn't matter if I have the gut biopsy - I would never go back to eating glutenous foods.

 

Seven miscarriages down and I'm unsure if I have the strength to try for another baby now I'm gluten free.

 

I'm just going to take the time to enjoy feeling better and see what the future brings.

 

Thank you all again for your support and words of encouragement.

 

I wish you all health and happiness on your journeys :-)

 

X

[BlessedMommy]

I'm glad that you found what works for you!

 

In the end, nobody needs permission from a doctor to do what's best for their own body. 

[ohiobob45]

I'm glad that you found what works for you!

 

In the end, nobody needs permission from a doctor to do what's best for their own body. 

Exactly :-)

I just feel so grateful to have found the answer, and the only person that needs to know that is me.

[1desperateladysaved]

Oh, I am welling up with tears.   Sorry, for your suffering and for the dear babies.

 

 

.  BUT at the same time, I am excited for you.  I am glad you made the discovery that cutting out gluten made you feel better.

 

I think a positive IgG test would qualify.  I have heard that the home tests are reliable, but someone could correct me if I am wrong.  Here in America they do test IgG as well as IgA for completeness.  Either positive is a positive.  The biopsy can confirm it and look for other damage.

 

Damage may be able to be found in the biopsy even beyond a few weeks, but they recommend a gluten challenge.  I won't do it for an official diagnosis.  Later you can retest nutrient levels to make sure they went up.