Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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

acjarvis

Recommended Posts

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


  • 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!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,556
    • Most Online (within 30 mins)
      7,748
    Majesticrb
    Newest Member
    Majesticrb
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • ckeyser88
      Roommate search

      By ckeyser88 · Posted

      I am looking for a roomie in Chicago, Denver or Nashville! 
    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.