New To Celiac...

[SusanB26]

Hi to everyone.

 

Long story short...  I already have autoimmune thyroid issues (Hashimotos) and unbeknownst to me have had symptoms of having Celiac/Gluten issues for a long time.  Autoimmune issues strongly run in my family; my father and his sibling all have (had) autoimmune disease, Type 1 diabetes, RA, and now we realize my dad most likely had Celiac but passed away from cancer before he could be properly diagnosed-but had lifelong stomach and skin issues.

 

I went to an allergist for allergy testing because I had been feeling so horrible.  Achy, exhausted, gastro issues, acne, eczema, migraines, etc.  Found out I was allergic to onion and garlic (alliums) which has proven difficult but do-able with a lot of work and effort.  He also suggested I go dairy and gluten free and do an oral challenge so I did.  Diary I'm finding I'm ok with in small quantities and never fat-free dairy. Gluten on the other hand?  Once I stopped gluten EVERYTHING went away.  I am never achy or exhausted, my eczema is GONE for the first time in 25 years.  And the weirdest thing?  I had dark patches of skin on my knees, 2 on each knee in a pattern... 4 different Drs over 10 years and nobody had a diagnosis other than "it's just dark patches of skin". No cream, skin bleach, lemon treatment, alpha-hydroxy could get rid of it.  All but the darkest one that first appeared at the age of 12 is GONE, and even the dark one is about 75% lighter.  It's like a miracle to me!

 

Anyway, the allergist tested my antibodies for Celiac AFTER he told me to go gluten free.  I would NOT go back to gluten if you paid me.  The test came back as a weak positive and he said to see a gastro for an endoscopy.  I then went ahead and ordered a gene test and found that I carry the celiac gene on side (probably my dads no doubt) and a gene that tends to cause gluten intolerance on the other side.

 

I am gluten free now for 3 months and so much better.  I know I had some antibodies even after being gluten free (but not enough to be called positive).  I already have an auto immune disease.  Should I go through with the endoscopy?  I feel odd saying "I have Celiac" when I haven't had a medical diagnosis, but do I really need one?  I know "they" say the only real way for an official diagnosis is through an endoscopy, but...

 

What are your opinions on this?  I appreciate everyone's time and knowledge and hope to become part of this community.

[kareng]

If you have been gluten free, an endo won't diagnosis you with Celiac. You need to be eating gluten, making antibodies and destroying your intestines to get a positive biopsy.

[SusanB26]

I have read it takes a long time for damage to heal after years of symptoms, and that 3 months is still enough time to be gluten free and get an endoscopy diagnosis?

[kareng]

  On 7/8/2013 at 7:28 PM, SusanB26 said:

I have read it takes a long time for damage to heal after years of symptoms, and that 3 months is still enough time to be gluten free and get an endoscopy diagnosis?

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Open Original Shared Link

[mamaw]

please  believe  Kareng  on this one...

[SusanB26]

I believe!!  LOL  That's why I came here to post this question.  I want real life expertise and opinions, not a Drs.  I was put through the ringer by Drs over the years with my thyroid.  That's a long story too, but I've come to be my own advocate, making educated decisions not just listening to docs.

 

So what would you do?  Live life as a Celiac, say you have Celiac (since the odds are against me anyway, that's most likely what it is just need one more test to totally confrim) and just go on with life?  Or would you eat gluten, feel absolutely horrible and then get an endoscopy?

 

Do any of you feel the need to have the diagnosis "validated"?  Is there any true benefit to it?

 

I am strict gluten free and feel perfectly fine again for the most part.  When I feel bad I'll get achy/tired and/or gasto issues and I'm usually able to trace it back to something that may have been cross-contaminated or had onion/garlic in it (which is harder than the gluten to be honest... any food that just says "spice" I can't eat without emailing the company).  A few days will go by and I feel better again.

 

Thank you!

[Ikgbrd]

I'm experiencing the same problem as you. My doctors said to go gluten free, and after a month in they told me to go back on it for testing. There's no way I'm doing it either, I'm still not feeling completely better yet but my progress is still pretty good.

I decided to get the endoscopy anyway. Whether or not I get an accurate celiac diagnosis, the end result is the same, no more gluten. And maybe they'll spot some other problems as well, because my digestive tract is quite obviously still having problems. I'd say definitely do the test, worse case scenario is that it'll be inconclusive, but you could still possibly get some answers.

[notme]

my opinion is:  a weak positive is still positive.  false negatives are common, false positives are not so much.  personally, you couldn't pay me enough $$$ to eat gluten every day for 3 weeks (when you already have your answer)  - i mean, unless you need it for legal/insurance reasons or whatnot.  and even then.................  not worth it to me  

[notme]

  On 7/8/2013 at 8:35 PM, Ikgbrd said:

I'm experiencing the same problem as you. My doctors said to go gluten free, and after a month in they told me to go back on it for testing. There's no way I'm doing it either, I'm still not feeling completely better yet but my progress is still pretty good.

I decided to get the endoscopy anyway. Whether or not I get an accurate celiac diagnosis, the end result is the same, no more gluten. And maybe they'll spot some other problems as well, because my digestive tract is quite obviously still having problems. I'd say definitely do the test, worse case scenario is that it'll be inconclusive, but you could still possibly get some answers.

right.  i didn't go back on it for my scope, either, and we were mainly interested in ruling out other problems.  when she took a look she could actually see the damage indicative of celiac.  therefore, combined with response to the diet, she declared me celiac.  whoop de doo    lolz - still means the same thing:  no gluten = feel better all over  

[1desperateladysaved]

I am glad you are having improvements after gluten free!  I didn't have an endoscopy.  I had obvious bloating (5 months pregnant maybe?),

A really positive genetic test, positive response to diet, and a doctor who had respect for and listens to  her patients.  Since my diagnosis, I have been found to have mal-absorption, food intolerances to nearly everything I was eating, and tenderness of the small intestine.  I have also had a repeat nutrient absorption test in which my body was shown to be absorbing better!  I won't eat gluten again.  I feel good about the testing I have had and confident that no endoscopy would have changed my current treatment plan.  For me, it wasn't worth the gluten challenge, for sure.  However, each one can make the decision about what is right for them.

 

No thanks to destroying intestines; I spent 30+ years doing that and now I am better.

[nvsmom]

I agree that a weak positive is still a positive, especially if you ad been gluten-free for a time prior to testing. Those celiac tests are pretty specific to celiac (meaning it's not likely that a positive test is caused by another condition).  Tis report, on page 12, shows how specific and sensitive each of the celiac tests are: Open Original Shared Link

 

I skipped the biopsy too. I was prtty sure my symptoms were caused by celiac after I had a positive blood test. I figured that if there were other issues, then I might as well wait to do an endoscopy and let the celiac damage heal before they had a look.

 

You might want to request some nutrient testing though. Celiacs are often low in potassium, iron, ferritin, D, B12, calcium, zinc and folate.

 

Welcome to the boards and best wishes in whatever you decide to do.

[txgal748]

I never went through an endoscopy.  My celiac panel was through the roof, so when I went to see the gastroenterologist he just ordered the DNA test. So, it is possible that you have had some healing over the past few months that would show a weak positive.  I was fine with not having the endoscopy because I know I feel much better.

[SusanB26]

Thank you to everyone who responded.  I chose not to have the endoscopy/biopsy.  I feel somuch better being gluten free I can't begin to imagine my life back on it.  I had heartburn/reflux that I thought I might want to get the endoscopy for, but now that too is simply gone.  I am living life as a Celiac and now use the term freely and comfortably.  The more research I did the more I realized you don't need a biopsy to confirm it.  Between family history, my own autoimmune issues, the gene test, and the presence of the anitbodies, I think I have my answer.

[AlwaysLearning]

I passed on having an endoscopy run and my new gastroenterologist hasn't pressured me to get one. He says that if I am reacting to gluten, then I really shouldn't be consuming it. And though I'm a little curious as to how much damage may have been done, in a way, I don't really want to know. I know that much of it has already healed.

Plus, from what I've read, the chances of false negatives are pretty high (unless you have a doctor that understands celiac) so getting the test could just as easily result in a false negative.

I do have hope for the future though. There is talk of new tests that could require a much shorter retox period of days rather than weeks, or that rely on newly-discovered markers in the blood rather than the invasive endoscopy procedure that has to be done in a hospital.

I'm with you. The thought of retoxing now is so horrifying to me that I may never get tested. I also don't feel the need to have confirmed what my body has already told me. If other's don't understand my new diet regime, that is their problem. Often it is fellow family members who are the least likely to believe you - most likely because that would mean that they need to take it seriously too. If they can't understand the ramifications of the genetic testing that you've already had done, then there is a good chance they also won't be willing to go gluten free even if they should.

If I do need to get a diagnosis confirmed in triplicate for some reason down the road, I just hope it is far enough in the future that the science and medical practices are a lot better than what we have available to us today.