Newbie Here! Some Biopsy Result Questions

[amos26]

Hi everyone! I just joined this forum (after lurking for a while!) and thought I would finally jump aboard since I am confused over biopsy results and my doctor's advice. First a little history.

 

I am a 26 year old female and I have had digestive issues since I was a baby. I also have many family members on my dad's side with self-diagnosed gluten intolerance (never gone to a dr to be diagnosed). According to my mother, I could never tolerate milk or soy formula, I had to be on a special, expensive kind... not sure of name or what it was made of. As a toddler, I had terrible bouts of constipation and was referred to a local GI and Shands. The local GI diagnosed me with an enlarged colon due to being impacted. Shands did an upper GI series, which according to my mom was normal outside the enlarged colon. Early childhood I still suffered from constipation even after using fiber supplements, special "tea" blends, a syrup meant to regulate the colon, and countless enemas (I say my childhood scarred me :/). My parents never really "cooked," as everything I grew up most of our food was out of boxes and cans, outside hamburger meat and chicken, only veggies we ate came from cans. I was always gassy and my stomach made gurgling loud noises. My teeth never grew in right... always causes me to feel self conscious. Going into my teen years I still had issues going to the bathroom and the stomach noises. I recall many stomach aches, and sometimes not having a bowel movement for up to two weeks (lets just say by time I went they were the size of baseballs sorry for TMI). I got canker sores alot, could never figure out why. As I grew up and moved out of the house, my now fiance taught me more about good food and cooking (thank goodness), which did help regulate me more but I was still getting stomach cramps so bad I would be doubled over in pain.... at this point nothing clicked in my mind it could be something I was eating causing them. I ended up having a baby boy when I was 22 and after that I started noticing more about myself. After eating anything with pasta or breads, I would get so bloated, have the stomach gurgles start up right after, and then usually cramp up. I also started getting more and more fatigued, wanting to fall asleep right after I ate (usually each meal involved wheat), brain fog and my memory getting worse and worse. I was still gassy, my constipation was now mixed with bouts of diarrhea/very loose stool. My bowels have always floated too. I've also been slowly losing weight. I've always been skinny, but at 5'4 and now at 104, I am at my lowest. I did gain 40 lbs with my pregnancy, but after that I have done nothing but lose (I went from 110 to 150 while pregnant, after my son was born I was 120).

 

In 2012, I started having palpitations. I work for a cardiologist and had a complete heart work up, all normal results. I was referred to an endocrinologist. He too, felt I was normal from a thyroid standpoint (even though I think my TSH is high according to new criteria which he did not agree on). His labs ordered were:

 

TSH - 3.5 (0.45 - 4.5) (I have read anything over 3 is hypothyroid)

T4, Free - 1.11 (0.82 - 1.77)

Antigliadin Abs, IGA - 4 units (0-19 is negative)

tTG IgA - <2 (0-3 is negative)

ANA Direct - Negative

tTG IgG - <2 (0-5 is negative)

Endomysial Antibody IgA - Negative

T3 - 159 (71-180)

Immunoglobulin A, Qn, Serum - 179 (91-414)

 

Basically I was told stress (family life with my fiance was difficult at this time) was causing me my palpitations, not thyroid. He never stated he was checking me got gluten intolerance or Celiac so I never questioned the above results since he said all was normal.

 

I went back to school in mid 2012, still having digestive issues, fatigue, etc. My teacher has Celiac and she told me about her symptoms and how blood test was negative but biopsy was positive. She mentioned I should try gluten free and see how I felt.

 

In April of this year, my last straw came after eating honey grahams my son wanted but did not eat and resulted in a 5 hour stomach cramp that had me in bed in a fetal position. I vowed to stop gluten (also now without insurance at this time to go to a doctor). It made such a difference! The cramps were gone, my loose stool and diarrhea occured less and less, constipation got better, stool still floated though. I felt more energy and I could finally stay awake after eating.

 

About a month ago I finally was able to get health insurance, and I was starting to feel less energetic and brain fog was coming back. My son was recently diagnosed with milk, soy, egg, wheat allergy (he has a long history too... another story for another time) so I started thinking maybe I too had an issue with milk (my teacher with Celiac had recently given up dairy because of fatigue). I went to a GI and discussed my history with her. She seemed good... listened and told me I may have Celiac. She ordered a CBC, TSH and wanted to do an endoscopy in a week and a half. She told me to go back on gluten the day before, but my gut was saying to go back on right after the appointment. I did not feel 10 days was enough after being gluten free, but I did it anyways. The first few days I had the stomach cramps come back, also started having headaches, and my bowels were now pencil thin. I had my bloodwork about 4 days into the re-entry of gluten into my diet. Since being in the healthcare field, I accessed my results before the doc got them and noticed for the first time I had some elevations (all CBC's before were within normal ranges)

 

Eos % - 6.3 (0-5)

Baso % - 1.2 (under 1)

RDW - 40 (11-15)

TSH was now 3.11 (0.45 - 4.50)

 

I started thinking maybe the increased Eosinophiles and Basophiles were from inflammation, and being my bowels were so thin, I figured that was the culprit. I kept on the diet, oddly the cramps got less but fatigue increased.

 

I had the biopsy, and the doctor told me after I awoke she found a small hiatal hernia. She wanted me to start Prilosec and see her in two weeks. Well, I have never had heartburn symptoms and Prilosec seemed to induce them after the first few days... so I stopped. I went back to being gluten free since I felt better that way. My bowels went back to being formed and not pencil thin. Fatigue got better (also would like to note the canker sores are gone being gluten free, but came back the 10 days of the gluten challenge). My biopsy results confused me, and all the doctor said was that I had inflammation that could predispose me to Celiac, but did not answer me on what was causing the inflammation. I questioned her about if I could have gotten the HH from years of straining to go to the bathroom... she said not likely because they just happen (what?! I have never heard that). She told me to stay gluten free if I felt better and see her in 6 months.

 

These were my biopsy results:

 

A: Duodenum biopsy showing preserved villous architecture with moderate numbers of lymphocytes.

B: Duodenum bulb biopsy showing preserved villous architecture with moderate lymphocytes.

Comment: The above duodenum and duodenal bulb biopsies show perserved villous architecture; however, there is an increased number of lymphocytes and, therefore, the tissues will be sent for celiac disease-3, celiac disease-8, and celiac disease-20 immunochemistry to determine if these lymphocytes are increased in number in the tips of villi suggesting subclinical sprue.

 

Separate Report:

The panel reveals no increase in CD3+CD8+Intraepithelial T-Lymphocytes. CD3 and CD20 demonstrate lymphocytes with a reactive pattern of distribution.

 - Small intestinal mucosa with mild chronic inflammation and no evidence of celiac disease.

 - There is no evidence of monoclonal B-cell lymphoproliferative disorder.

 

So sorry for making this post long, but after such a long history of stomach issues I thought for sure Celiac would be my diagnosis. I question if the gluten challenge was long enough, and the biopsy results for that matter. I would love your opinions!!! Thank you so much for taking the time to read this!!

 

 

[1desperateladysaved]

Are you expecting that they will give more information about the tissues found? 

 

It sounds like your reaction to the diet was positive!  That is good.  I also had the diameter of BM's change after going gluten free.

 

D

[amos26]

As far as I know, there are no more reports due back. I was frustrated at how generalized the report was. I live in FL and my GI doc is in Ormond. The biopsy samples were sent to a pathologist in Delray Beach, so not close to where I am located.

[cyclinglady]

I'm formally diagnosed with celiac disease but my husband (he's been gluten-free for 12 years) is not.  He either has celiac disease or a gluten intolerance (we'll never know), but he does know that he won't go back to eating gluten.  He's healthy and happy. 

 

If you're responding to the gluten-free diet, I'd stick with it.  I'd also try to determine if you have other intolerances as well.