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Jherm21

Second guessing diagnosis

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I have been on this forum for a few days with a previous diagnosis from my GI doc about a month ago. I showed up negative for the whole celiac panel. He checked all antibodies. I must sau I do not eat a lot of bread prior to diagnosis actually gave up bread itself a year ago but still treated my self to crutons,crackers, cakes and all the other foods that contain gluten. After he seen my serological test was negative he still wanted to do the endoscopy and colonoscopy because for my age he said my b12 was low (it was at 380 which i think is fine) also because I complained of diarrhea, bloating and he assumed weight loss but I hadnt noticed weight loss until I started my diet. He said I had celiacs because the pathology reported increased IEL and viloous blunting to the villi. I also got a gene test and it showed I was negative for HLA dq2 but positive for HLA dq8. My brother who has more gi symptoms than I ever did tested negative for celiacs in the blood panel. I keep second guessing myself that I dont have celiacs. My colonoscopy was normal and we checked for parasites, common variable immunodeficiency and even HIV all were negative. I have more neurological symptoms than gi issues alothough I guess the gi issues have just become a part of who I am so I hadnt ever noticed the diarrhea and constipation. Ive also been diagnosed with hypothyroid but not hashimotos as my endo said the size of my thuroid looked fine on the ultrasound and the antibodies test showed low antibodies I think at like 10. Does anyone know if I for sure seem to have celiacs. And whats a definite confirmation protocol? Probably looking into another endoscopy after the diet for a while? See if the villi changed? 

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Hi Jherm

I think you may be looking for someone to say you don't have celiacs:

2 hours ago, Jherm21 said:

I keep second guessing myself that I dont have celiacs

But all of these:

2 hours ago, Jherm21 said:

My colonoscopy was normal and we checked for parasites, common variable immunodeficiency and even HIV all were negative.

are irrelevant to a celiac diagnosis.

Whereas this:

2 hours ago, Jherm21 said:

I have more neurological symptoms than gi issues

is very common to celiacs, in recent years its become apparent that those for whom GI issues predominate may be in a minority.

2 hours ago, Jherm21 said:

Does anyone know if I for sure seem to have celiacs

No-one here can answer that but the person who is best placed to answer this question is the GI doc whose opinion you're second guessing!

2 hours ago, Jherm21 said:

And whats a definite confirmation protocol

Standard is the blood test (which not all celiacs will show on) followed by the endoscopy - which you had, a positive on the endoscopy along with a positive reaction to the gluten free diet should be sufficient confirmation. 

I guess my question is why you're unsure? What's your reaction on the gluten free diet? Does it alleviate symptoms? How long have you been on it? Neurological symptoms can take longer to clear up?

 

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Did you know that 10% of celiacs test seronegative?  Yep.  So, you can not rule out celiac disease yet!  

http://www.mayomedicallaboratories.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf

Probably, trying the gluten-free diet for the next six months to a year is your best bet.  Your symptoms should improve, but note that neurological symptoms seem to take the longest to resolve.  

There are other things that can cause villi damage too, but it appears that your GI is working on ruling those out.  

http://www.cureceliacdisease.org/faq/what-else-can-cause-damage-to-the-small-intestine-other-than-celiac-disease/

It would be lovely if celiac disease was easy to diagnose, but most often it is not!  

 

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Ive only been gluten (and dairy free) for 6 weeks now. I can say the abdominal distention I was having is gone. No more bloatedness, the diarrhea was only active in the morning that is now becoming regular somewhat and also some constipation which could be my underactive thyroid or just hopefully my intestines healing? I have swollen lymph nodes in my neck for the past geez however many years (which the doctors always told me were benign now I wonder whats really gping on) and the neurological symptoms are still there and somewhat strange and subtle. I went to a celiac support group meeting and asked the gastro on site some questions regarding my diagnosis and she said in a somewhat grumpy voice "its very rare to have a negative blood test!" i would look into another diagnosis (even though my doctor and I have already checked a few off the list. So all in all my stomach has felt better but as far as the weird neurological symptoms and sort of brain fog confusion are still lingering. I will say I was getting this extreme off balance feeling that I had to walk and find things to hold on to as I walked othrrwise I felt drunk. That symptom seems to be getting better. Hopefully the diet helps me. Regardless I have to get my thyroid correct I think in order to notice big changes in the gluten-free diet. I just hate when one doctor tells you one thing and another one gives their opinion. And you think well if its not celiacs than what. Because something is obviously wrong?!? And by the way I know like Nsaids can cause damage but I dont take them

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The balance issue is called gluten ataxia, it's another sign of celiacs, as is your positive reaction to the gluten-free diet. I think as you may realise 6 weeks is just too soon to expect all symptoms to resolve, but try to focus on the improvements you've already noticed because they're incredibly positive! 

It may help to keep a short food journal, writing what you eat and how you feel, because it's really difficult to track the neuro symptoms in particular. Hopefully you will be able to see for yourself an improvement in your general mood and in specific symptoms using it. One thing which you have to try to take account of, the brain fog etc makes it very difficult to objectively assess how we are actually doing, so the journal would help with that a little. 

That journal may also help you to look at your diet to see if your getting the best mix of nutrients possible. Try to look at this period as a time to heal the damage, so treat your body kindly and try and give it as much good quality fuel as possible.

Everything you have written looks to me on the outside to fully endorse your doctors diagnosis. I think you are making progress, probably have a lot more healing to come and with it some nice surprises as you recover. Stay strong and, hard as it is, try not to worry or stress about other potential illnesses whilst you recover. :)

 

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Neuro symptoms take the longest to disappear/improve.  Those were the last to go when I went gluten free and it took a couple of years for that to happen.  You are in the beginning stages of recovery so be patient and things will slowly, over time, improve.
 I had the same dizziness, off balance symptom and it was really bad.  It's all a thing of the past!

As far as gastro doctors go, it is common for them to disagree on a number of things. I don't know why, but they seem to like to discount or bash other doctors opinions. It is not uncommon to have a negative blood panel.  I have been gluten-free for 12 years and I have lost count of the numbers who tested negative on blood work and positive on biopsy. Certain medications can interfere with testing and many never check to see what people are taking.  I became so disgusted with their attitude and lack of help that, to this day, I do not have a GI doctor. Since I went gluten-free and my gut healed, all has been well so I don't need one.  I also have thyroid disease and that can wreak havoc with symptoms if you don't have that well managed. It took awhile for me to nail everything down so don't worry...you will get better!

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