I get that fullness in my throat when my Hashi's is flaring. It aches, too. My doc said it's because my thyroid is enlarged and pushing on my trachea. You need t3 and t4 testing. I would be willing to bet you have Hashi's and need supplementation. I had every one of your symptoms before I went on thyroid meds.
The positive EMA is virtually 100% specific for Celiac. You also have a positive DGP, which is also very specific for Celiac. I would not bother with a biopsy if I were you (but that is just me). Because your mom is Celiac, I would consider yourself diagnosed.
I have tested positive for the Celiac gene. I have a laundry list of Celiac symptoms including chronic D, stomach pain, bloating, joint pain, neutropenia, psoriasis, sporadic cracks on the sides of my mouth, sporadic canker sores, tingling feet and hands etc etc. If I eat gluten, I feel absolutely awful immediately. Hands swell, fecal incontinence the next day, stomach pain, swollen hands, itchy skin and eyes etc. In 2004 I tested negative for Celiac on the non-genetic test and was told I have IBS. This month, I demanded the genetic test due to increased symptoms (and more research on my part). Between the negative non genetic test and the positive genetic test, I gave birth to three children and have experienced more than usual stress. My doctors (a hematologist for neutropenia, regular MD and GI all decided I needed an endoscopy to confirm the suspected Celiac. BTW - this would be my third endoscopy. I had two others in 2010 for an emergency food impaction and a retest because of raised eosinophils (that turned out negative upon second exam). I just recieved the results - NEGATIVE for Celiac. No real villi damage. My doctor said my villi looked "sandy" but not flat. I do not have anemia (just neutropenic and also low platelets) or low B12 so I am clearly able to absorb nutrients.
I am SO confused. I suppose the answer is to just go gluten-free? Possibly just latent Celiac? But what about all the zillion symptoms? Anyone have any advice?
Many thanks in advance!
Have you had a recent Celiac blood panel done? Just because you were negative years ago does not mean that you stay negative. Those biopsy results sound suspicious to me. "Sandy"? Some docs won't dx Celiac unless the villi are totally flat, this is a common cause of falsely negative biopsies.
Thanks Lisa! My tests were negative, TTG (iga), AGA (iga and igg), and EMA. Normal Immunoglobulin levels. The DGP was NEVER ordered. Hmmm, wonder if this could be the missing link?
I am just so frustrated because my stomach hurts every single day.
I only had my ferritin, B-12 and Folate checked. All normal. But my teeth are eroding badly (according to a recent dentist visit) so I know I have malabsorption issues. All this plus my son has similar symptoms!
Why is testing so elusive????
The ONLY tests that was positive for me was the DGP. It was very high. I cannot eat gluten or I get very ill, with symptoms exactly like yours. I wonder why your doc is not using the DGP, as it has replaced the anti-gliadin abs because it it much more specific for Celiac. Also, getting tested for the genes could help add some pieces of the puzzle.
Get a different doctor to do the endoscopy with biopsy. You need to know what the scope is being done to "rule out or rule in/diagnose. If this can't be discussed with you before and your concerns addressed ~This is NOT the doctor for you! Maybe it is just your "gut" feeling this is the wrong doctor. I would bet money on your being right in this case. (Sorry about the pun couldn't help it)
Daily nausea could be a sign of gastroparesis. I have it. It's caused by your stomach emptying too slowly. An upper barium swallow study would give you more info on this condition than an endoscopy! I think you need a new doc!