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Unexplained Weight Loss,increased Intraepithelial Lymphocytes On Biopsy & Many Other Symptoms

acjarvis

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acjarvis Newbie
acjarvis
Posted

Hi! This is my first ever post on a forum and am hoping to find guidance, support and most of all being understood! I have had unexplained weight loss (10lbs in 6mos), joint pain, extreme "mental fog" and irritablilty for well over a year. I have tried so hard to gain my weight back(i'm 5ft and lost 10% of my body weight).I feel like I look like a skeleton. I was eating doughnouts for breakfast, hotwings, pizza, lager beer, you name it- if it was high in calories, i was eating it to try and gain weight. I have not excercised in over a year. Not gaining a pound. I was also having a lot of joint pain, esp in my elbows and would some times feel like I had the flu. I finally felt so bad in November that I went to the doc and said fix me, i can't take feeling like this anymore. She sent me straight to a GI doc who took an extensive history from me and wanted to test me for Celiac disease. He set me up for an endoscopy w/biopsy and colonoscopy to r/o cancer. Biopsy showed increased intraepithelial lymphocytes. No villous damage. Can you have unexplained weight loss, biopsy results as mine and have celiac disease? I have started reading about celiac disease and am shocked by the number of "non-gi" symptoms caused by celiac disease. I felt like the list was made for me...or have I become a hypochondriac? It is so very frustrating. If anyone has experience, thoughts, guidance about my story/symptoms, I would be super grateful for your time and discussion.

Here are some of the other symptoms I have had, off and on for 6 yrs.

Many episodes of depression/anxiety. on wellbutrin now for about 1yr

Difficulty concentrating, finishing thoughts or sentences...fog like state

Joint pain

Pain between my shoulder blades since 2006 (i had always thought it was my gallbladder, but tests never showed problems)

Intense abdomminal pain that has had me on the floor, which later, i attributed to a gas bubble??

Bouts of constipation

Hair is thinning in the front

Fatigue and muscle weakness, i can barely open some of the heavier doors at work-quite embarassing

Periods of what i call hypoglycemia...not sure if that is what it is but am lightheaded, dizzy, weak and shaky

Bouts of nausea and tenderness in the upper middle part of my stomach

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sickoftummyaches Newbie
sickoftummyaches
Posted

I had the same biopsy results...lymphocytes without atrophy. I hope someone has an answer for us. I'm IgA deficient, so the bloodtest is useless for me.

Skylark Collaborator
Skylark
Posted

You are NOT a hypochondriac! Yes, you can have your symptoms, your biopsy, and be celiac.

Intraepithelial lymphocytes are the "bad boys" that do the villous damage in celiac disease. There should be a few, but if there are a lot there is inflammation in your intestine. Increased IEL (Marsh 1) can be either early celiac disease or inflammatory bowel disease. Did you have any antibodies on your celiac panel?

missy'smom Collaborator
missy'smom
Posted

With that kind of weight loss and possible hypoglycemic episodes it would be wise to rule out diabetes/blood sugar issues. There are certain types of blood sugar problems that those of us with autoimmune isseues are more vulnerable to. An OGTT-3-5 hr. and an A1C would give alot of data to help sort it out.

My experience with diabetes matches yours with weight loss. I am 5'1 and was always very petite(under 100lbs.) but suddenly lost 20 lbs. that I couldn't afford to lose and looked like a skeleton. That's what prompted me to demand diabetes testing and I walked out with a diagnosis. I've probably had both diabetes and celiac disease all along.

There are certainly other things that can cause weight loss but it would be wise to rule out diabetes. If blood sugar problems show up, they may reverse themselves in time as you addresss other health issues but at least with testing you'll have the tools to effectively manage it in the meantime and prevent further damage/loss of control.

acjarvis Newbie
acjarvis
Posted
  • Author

You are NOT a hypochondriac! Yes, you can have your symptoms, your biopsy, and be celiac.

Intraepithelial lymphocytes are the "bad boys" that do the villous damage in celiac disease. There should be a few, but if there are a lot there is inflammation in your intestine. Increased IEL (Marsh 1) can be either early celiac disease or inflammatory bowel disease. Did you have any antibodies on your celiac panel?

Thanks for the response and information. I felt a glimpse of hope until I received a letter today from my doc which said "results from celiac disease labs are w/in normal limits and I do not believe that you have celiac disease....want to see you back in 2 months". I just want to cry...why do I have all of the various symptoms and increased IEL's? Do I find another doc, do I give up? Maybe I should self diagnose, remove gluten from my diet and see if things get better. Any guidance, is much appreciated :) .

acjarvis Newbie
acjarvis
Posted
  • Author

With that kind of weight loss and possible hypoglycemic episodes it would be wise to rule out diabetes/blood sugar issues. There are certain types of blood sugar problems that those of us with autoimmune isseues are more vulnerable to. An OGTT-3-5 hr. and an A1C would give alot of data to help sort it out.

My experience with diabetes matches yours with weight loss. I am 5'1 and was always very petite(under 100lbs.) but suddenly lost 20 lbs. that I couldn't afford to lose and looked like a skeleton. That's what prompted me to demand diabetes testing and I walked out with a diagnosis. I've probably had both diabetes and celiac disease all along.

There are certainly other things that can cause weight loss but it would be wise to rule out diabetes. If blood sugar problems show up, they may reverse themselves in time as you addresss other health issues but at least with testing you'll have the tools to effectively manage it in the meantime and prevent further damage/loss of control.

Thanks for responding. You know, diabetes had crossed my mine but I just blew it off. I typically have a normal glucose when tested (90) but my last labs it was slightly elevated (113). A couple of weeks ago I was feeling really weak and shakey and a friend of mine who is a diabetic tested me w/ her meter. The result was 74. She said that I did not want to get much lower than that. She was diagnosed when she was in her 40's. I am 42. Think I will schedule my well visit and ask my doc to persue testing. Thanks again for your insight!

Skylark Collaborator
Skylark
Posted

You have had all the testing done. Try the diet! If you feel better, you are probably somewhere along the road of developing celiac disease. It is a process, starting with gluten intolerance, and ending with tons of antibodies and villous atrophy. Doctors only diagnose the people who are the most sick but you can feel 100% better if you are anywhere in the gluten intolerance/celiac process and eliminate gluten.

Don't be afraid to take your health into your own hands. You know your body better than any doctor possibly can. A gluten-free diet is not dangerous at all and there is no harm at all in giving it a shot.

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  • 1 year later...
omkh05 Newbie
omkh05
Posted

Hi bro I have to same problem. I had endoscopy which showed mild increased intraepithelial lymphocytes. Got tested for celiac disease but came out negative. and rite now I feel the same like you. lightheaded, dizzy, weak and shaky don't know what to do. I want to ask you did you try that gluten free diet if yes let me know if it helped. thanks

  • 3 months later...
mamacat Rookie
mamacat
Posted

I had increased Intraepithelial Lymphocytes on my biopsy with no villous atrophy (Marsh 1) and my dr. diagnosed me with celiac, but I was at a celiac center so maybe they are more knowledgeable than a regular GI doc? I think you need a second opinion. I has negative tTG but very high deamidated gliadin IgA tests, so combined with multiple symptoms (joint pain, digestive issues, brain fog, dizziness, etc.) it was enough for them to make the diagnosis. I've been gluten-free for 2 months and most of my symptoms have definitely improved. Before self diagnosing, I would go for 2nd opinion and maybe run more tests. Did you get the deamidated gliadin tests? I've read that can be just as or more effective than tTG, but most doctors just assume it's the old gliadin tests which are unreliable, so they dismiss them.

You MUST be your own advocate and listen to your gut (literally and figuratively ☺). If you still think you might have it, go to another doc, preferably one who specializes in celiac. Good luck!

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