Gastritis, Tachycardia, Endoscopy and biopsies

[Kimbercup7]

Hi.

Oh, my story.  Where to begin?  I am 48 years old, and have always had tummy issues, as has most folks in my family. Most of my life, I was the queen of constipation.  Now, its the other.  I have always seemed to get bloated, and gassy, and never felt normal with food.

I lost my Daddy this past January to complications from Diverticulitis.  We (my siblings and I) have always called our various general gut issues "ibs" for lack of a true specific diagnosis.

I do not have either gene for full blown celiac disease (gene testing done about 10+ years ago) and not sure if they knew back then what they know now about the genes that carry Celiac, but I had a dermatologist that was convinced that I had dermatitis herpetiformis.  I had every symptom for 15 long years.  Persistant rash on my Legs and trunk and buttocks , occasionally arms, started out as itchey bumps, pustules that itched and hurt, and were exactly symetrically on both sides of my body, like a mirror image.  This went on pretty much CHRONIC in cycles for over 15 years till about 4 years ago, it just began to finally clear. Literally for 15 years, I had to wear clothes that covered this awful rash, my legs always looked like I had a bad case of the chicken pocks.  I have not had a bad break out since.   It was never biopsied, so I have no idea if it was really DH.  But, the dermatologist was not able to give me any other definitive diagnosis. He did prescribe Dapsone trial to see if it would help, as nothing else every did.  While taking Dapsone, I saw much relief, but could not stay on it long term because my liver exzymes came back irregular.  Oh, and ps.  My Daddy had this same unexplained chronic  breakout rash on and off over the years as well.  Never diagnosed.  

About 4-5 months ago, my gut issues took a turn for the worse.  After eating a meal, my heart would race for anywhere from 3 to 5 hours.  I would often go to bed at my normal time, and be unable to sleep due to my heart pounding.  I would clock it at 120-135 beats per minute.

GP of course, diagnosed me with anxiety.  He really wouldnt listen to me, already determined my symptoms as psychosomatic.  No tests, only CBC and the normal blood count.

He did put me on Metoproplol because I have a murmur, and he felt it would be safer for my heart to be on a beta blocker.

Here it is 4 months later, and my tummy has gotten much worse.  Now, after every meal, stomach pain, unbelievable amount of gas fills my stomach, and I get full very quick.  Weight loss.  Just miserable.

I know I have a dairy intolerance, and avoid dairy like the plague.  I also have a soy intolerance, but was still trying to get away with eating it a couple times a week.  Eggs constipate me terribly, and make me feel nauseated when I eat them, even though I love them.  I have always suspected that I had a wheat intolerance as well.  And, to make this even more flabbergasting, I LOVE LOVE LOVE chicken, but it constipates me too.   

I have had "allergy" skin testing.  I did test very allergic to all wheat grasses.  I get asthma reactions if I am around wheat flour.  Just not sure if I am allergic or intolerant to consuming it.

Finally went to a gastro doctor last week.  He immediately ordered an ENDOSCOPY, which I had done yesterday.  He diagnosed "Chronic Gastritis" and also biopsied me for Celiac disease, among other things.

Question 1.  Can skin DH turn into Celiac disease in the gut??  Are the SAME GENES involved with DH as are with internal Celiac?

 

Question 2.  Is there a true "non celiac" intolerance to wheat?  if yes, how in the world do you find out for sure?  Are there blood tests for that sort of thing??

 

I am still eating wheat.  I guess mainly because, when you are intolerant to eggs, soy, dairy, and meat, what on earth is there left to eat besides bread products and veggies?

 

I was told 2 weeks or more for my biopsies to come back.  In the mean time, I am trying to learn all I can.  Anything anyone can tell me, or share, would be greatly appreciated!!

 

Hungry in Ga.  

 

 

 

 

 

[GFinDC]

Hi Kimbercup,

The biopsy is a good thing to do .  Hopefully they took 4 to 6 biopsy samples per current guidelines.  In the meantime, do continue to eat gluten and see if the doctor will do a full celiac disease panel for you, not just the ttg IgA screening test.

People with DH (dermatitis herpetiformis) can sometimes "fail" the blood antibody tests, even though they have celiac disease.  So you want to get all the possible antibody tests, including the DGP IgA and DGP IgG.

Yes, sometimes people have the DH rash but don't have severe digestive symptoms at first.

The celiac genes are the celiac genes, how they affect different people is variable.  But if you have DH, then you have celiac disease.

You may want to read over the DH (dermatitis herpetiformis) subsection of the forum.  If you like I can move your thread to that forum section.

There is a Newbie 101 thread in the Coping With subsection that may have helpful info for you.

Welcome to the forum!

[squirmingitch]

Hi Kimbercup, DH is a weird bird. It can come & go seemingly at will as if it has a mind of it's own. It can present whether you're eating gluten or gluten free. The antibodies get deposited under the skin like little land mines just waiting for something to set them off. A dx of dh IS a dx of celiac. DH is the skin form of celiac disease. Yes, the genes are the same since the disease is the same. I wouldn't put too awful much stock in the gene test you had since there are actual cases of people not having "the celiac genes" yet certainly DO have celiac -- blood & biopsy proven. Generally, with dh, the gut damage is patchier than with "regular" celiacs and 60% of us with dh test negative on the celiac serum panel. DH can "go away" for years; and it can come right back too.

There is a non celiac sensitivity to gluten. It is called non celiac gluten intolerance (NCGI) or sensitivity (NCGS). At this time, there is no test for it.

One can also have a wheat allergy AND also have celiac disease so both can run concurrently. 

I am SO glad the GI ordered an endoscopy right away!!!! You really do sound like a prime celiac candidate. If your biopsies come back positive then all first degree relatives will need to be tested every 2 years in the absence of symptoms and immediately if symptoms present but they MUST be eating a gluten diet for testing. If they have been gluten-free or gluten light, they will need to eat gluten every single day fro 12 weeks before the serum panel.

The good news is that when you go gluten free a lot of those symptoms and food intolerances you now have will go away. Not immediately but in time. Maybe all of them will resolve. You will need to heal fully before you'll know and even then it can be a few years for some of the worst symptoms BUT healing DOES happen, it really does!

I want to hear one day that you ate chicken and were just fine afterwards!