Follow Up On My Atypical Labs

[SkyBlue4]

I posted a month ago (maybe two) about my labs and thought I would post an update after finally being seen by a Gi doctor.

 

My labs had revealed low IGA but mildly elevated tTG IGA and tTG IGG. Yep, I'm an anomaly  .

Here's a link to the thread with my labs.... https://www.celiac.com/forums/topic/103321-understanding-my-labs/

 

Today the Gi doc looked at my labs and said I undoubtedly have Celiac disease. I was not fully shocked since I had had plenty of time to research and read through this forum but I thought he would wait until after the endoscopy to give the diagnosis. I still have to have the endoscopy (with all biopsies) but he said he really wants to simply assess the extent of the damage I have from Celiac. It will be my baseline before beginning a lifelong gluten free diet. If the damage is extensive, a repeat biopsy will be scheduled for 3 months after the diet has begun. I have to see a nutritionist as well. 

 

The problem here, of course, is that I have to stay on gluten until the biopsy which is not until the middle of November. I just want to eliminate gluten NOW. I have had a ton of symptoms for so long and I am anxious to see if I can feel better gluten free.  

[Gemini]

There is no reason for you to stay on gluten with a diagnosis from the doc.  He will still get information on the biopsy in November but you do not need the biopsy as an additional diagnostic test.  He will still be able to see any damage that is still present, if damage is visible under the scope but that doesn't matter either. What would he do if there were no damage found on biopsy....tell you that he changed his mind and you don't have Celiac?  That's silly.  With mildly elevated tTg on a person who is low on IgA, he was using common sense to recognize Celiac.  Especially with you complaining of a ton of symptoms.

 

I would go strictly gluten-free now but have the biopsy if you wish.  You will still have a baseline on what your gut looks like. By November, it should be confirmed anyway from the dietary trial you'll be doing.  I was diagnosed via blood work also but knew without a shadow of a doubt that I had Celiac by the time I got the results.  Within 3 days, the most basic and life threatening symptoms had diminished just by going gluten free.  It was profound.  November is a long way away to keep eating food that is making you sick and damaging your insides.  I wouldn't do it. 

 

Good luck and I am happy that you are getting answers to your problems! 

[answerseeker]

I agree with Gemini. I wouldn't keep making yourself sick wtih gluten. I was diagnosed by my GI doctor based on symptoms, malabsorption, and DH on my stomach. My biopsy was inconclusive because I was on prednisone, a very high IV dosage of it. I was hoping I wouldn't have to do a gluten challenge for a repeat biopsy and was relieved when my doc said no further testing necessary, I am diagnosing celiac disease.

 

the fact that you already have other AI diseases, is enough evidence to go gluten free now. it's just going to continue to make everything worse if you continue to consume it.

[SkyBlue4]

Thank you and I agree. I am contemplating starting a gluten-free diet before my endoscopy. 2 months is a very long time to know exactly what is making you so sick and continue doing it anyway. And for what? To see how bad it is? It doesn't make much sense, I know.

 

But the hesitation I feel comes from concern that I won't fully commit if I hear that I looked normal during the procedure. That it may plant the seed of doubt. Can I possibly heal enough in 2 months to not see any evidence of the disease anymore?

 

I need time to process all of this, I suppose. And as I remember someone saying in another thread, I need a little time to make peace with all the foods I will soon give up. One last trip to the bakery (and beer distributor)      

 

[Piccolo]

Sky Blue

 

I disagree with the other posters.  You will start to heal on a gluten free diet and that will not really be your baseline.  Also as you start to heal that could make the biopsy negative.  I would continue to eat gluten until all testing is done.

 

Susan

[Gemini]

.......and Sky Blue could continue to damage his/ her intestines and the doctor won't find it so they will be in the same boat. If someone has elevated tTg, and a doctor is willing to diagnose Celiac based on that and symptom list, why is it that people still doubt they have a gluten problem?  I don't understand the thought process of those who doubt their ability to follow a gluten-free diet when they really need to, based solely on what a biopsy would say.  What will happen if the biopsy is negative?  That happens a lot around here.  There is also gene testing as an added option to bolster a diagnosis.  But getting back to your question of whether or not 2 months would make a difference in healing time, it may or may not.  Don't assume because your blood work was positive that the doc will find damage.  The small intestine is the size of a tennis court, if laid out flat.  Picking and choosing biopsy sites is total Russian Roulette, unless you have Marsh 3 damage.  tTg levels do not correlate to damage, either.  Some people have negative blood work and very positive biopsies.  Every one is different in how they present.

 

You should never think of the gluten-free diet as "giving foods up".  I never thought I was giving foods up but just shifting to new foods I haven't tried yet.  The only thing you give up are processed, junk foods...for the most part.  However, pancakes, brownies or whatever you desire can easily be made gluten-free and they taste even better, in many instances.  I never missed regular bread because I got so very sick from eating it and I was eating artisenal breads from a bakery.  Gave them up immediately without any issues because I wanted my life back. I have discovered many new foods which I now cannot live without.    It is not as hard as it sounds and staying positive about the whole thing makes it even easier.  I can guarantee you that if your health really improves on the gluten-free diet, you will not think about "that other food". 

[answerseeker]

.......and Sky Blue could continue to damage his/ her intestines and the doctor won't find it so they will be in the same boat. If someone has elevated tTg, and a doctor is willing to diagnose Celiac based on that and symptom list, why is it that people still doubt they have a gluten problem?  I don't understand the thought process of those who doubt their ability to follow a gluten-free diet when they really need to, based solely on what a biopsy would say.  What will happen if the biopsy is negative?  That happens a lot around here.  There is also gene testing as an added option to bolster a diagnosis.  But getting back to your question of whether or not 2 months would make a difference in healing time, it may or may not.  Don't assume because your blood work was positive that the doc will find damage.  The small intestine is the size of a tennis court, if laid out flat.  Picking and choosing biopsy sites is total Russian Roulette, unless you have Marsh 3 damage.  tTg levels do not correlate to damage, either.  Some people have negative blood work and very positive biopsies.  Every one is different in how they present.

 

You should never think of the gluten-free diet as "giving foods up".  I never thought I was giving foods up but just shifting to new foods I haven't tried yet.  The only thing you give up are processed, junk foods...for the most part.  However, pancakes, brownies or whatever you desire can easily be made gluten-free and they taste even better, in many instances.  I never missed regular bread because I got so very sick from eating it and I was eating artisenal breads from a bakery.  Gave them up immediately without any issues because I wanted my life back. I have discovered many new foods which I now cannot live without.    It is not as hard as it sounds and staying positive about the whole thing makes it even easier.  I can guarantee you that if your health really improves on the gluten-free diet, you will not think about "that other food". 

 

 

I again agree with Gemini. My biopsy was negative, partly because I was on prednisone and it could have healed the part they biopsied, and partly because like Gemini said the damage is sparatic and the intestine is huge. My GI doctor said the same thing and he couldn't gaurantee they didn't miss the damage, especially due to the obvious malnutrion I'm sufffering. It still messes with my head like I try to say oh I may not even have celiac the doc couldn't find damage, but that's the craving talking, I then get my head back on straight and remind myself I was diagnosed by a very competent GI dr with a lot of celiac experience (his daughter in law has celiac disease). oh and the fact that I had broken out in DH on my stomach and when my doc saw that it sealed the deal

[cyclinglady]

Well, I definitely disagree with Gemini regarding giving up foods!  I did give up gluten and I miss it.  Maybe it's because for years, I had already given up milk, garlic, nuts, mushrooms, and eggs!  It's HARD to give up even more foods.  Granted those that I just listed were easier to give up because they made me sick  -- but not gluten!  I didn't have any symptoms.  Yes, I'm baking gluten-free, but  I am still mourning the loss of being able to go out to dinner easily.

 

Now, after being gluten free, when I've had exposure, it's made me really sick for a week.  That doesn't happen if I eat/drink milk or eggs, etc.  I can typically recover after a day or two.  

 

I did not have symptoms prior to my diagnosis except for my Hashi's (had for 15+ years) and on and off again anemia (though I was going through menopause and 30 day periods were not helping).  I did develop abdominal symptoms after my blood test, but I went kind of crazy eating a loaf of bread day, literally (and not some store-bought stuff, good homemade bread).  But, my symptoms were never that severe:  rock feeling in gut, indigestion, a little bloating).  

 

So, it's a hard decision to make, but at least after having a biopsy, I do have a baseline to determine improvement.  I went forward with the biopsy, because I still couldn't believe that I had celiac disease and my symptoms didn't warrant real avoidance unlike:  eat hot dogs = vomit in two hours or eat ice cream = immediate stuffy nose and later diarrhea).  I also wanted a definitive answer since my husband who has not had a formal diagnosis, went gluten-free for 12 years and refuses to ever to a challenge (who could blame him)!  But, he'll be the first to say, that it's been much easier on him  for me to have had a formal diagnosis.  He's had to take a lot of grief from family and friends going gluten free.

 

Good Luck!