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LindaJoy

By LindaJoy
in Coping with Celiac Disease

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LindaJoy Newbie
LindaJoy
Posted

Hello, everyone.

My name is Linda Parsons. I am a 42 year old who lives near Lima, Ohio. I have had a heck of a year. I've been in the hospital eleven times this year. Docs still don't know what's wrong with me. But, here's where celiac comes in.

I've had 5 EGD's and two colonoscopies since August. The first four EGD's showed gastritis and eosinophilic esophagitis. Little more.

THis fifth one that I just had done showed "mild scalloping of duodenal folds." Also "increased intraepithelial lymphocytes extending to the villous tips" with "focal intrepithelial neutrophils." My "villous architecture is well preserved."

I have had abdominal pain, sometimes severe, since March, along with severe diarrhea. I've lost over 20 pounds, get dehydrated quickly, have rashes, and hourds of other symptoms.

I had the blood work done for celiac. All came back normal, so my docs said, no, you don't have celiac, eat what you want.

My question: After internet research, I'm finding that I may still have celiac.

But if not, what could be causing my celiac-like findings? Also, how could it be missed through four other EGD's (another at Cleveland CLinic, two at Mayo, and one at home), plus two complete blood work ups?

My gastro here at home has thrown his hands up and won't help me anymore. The gastros at CCF say it's not celiac but they don't know what's going on with me. Along with the EE, I also have gastroparesis and gastritis.

Please let me know your thoughts. I can use all the help I can get. I'm desperate here.

Thanks you.

Linda Parsons

poetess1_26@yahoo.com

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jerseyangel Proficient
jerseyangel
Posted

Hi Linda, and welcome! I'm glad you found us :)

Wow--you've been through so much! Have you flat-out tried the gluten-free diet? There are many people here that have had negative testing--both blood and biopsy. They get great relief of many, if not all, of their symptoms by omitting gluten. Since you have already had those tests (and then some!), why not try going gluten-free yourself?

You may also have other food intolerances at play here, too. Dairy and soy are other foods that can cause problems for certain people.

I would probably try gluten free first--then test dairy.

tiredofdoctors Enthusiast
tiredofdoctors
Posted

Hi Linda -- welcome. Please know that you've reached the right place. The people on this forum are the most kind, nurturing people -- and VERY knowledgeable. Over a year and 1/2 ago, they literally saved me from . . . . well, myself. I was in a turmoil about going gluten-free, that my doctors had said one thing, but the Mayo Clinic and Johns Hopkins said that nothing was wrong, etc. . . . I was making myself a crazy person!

Then, I came on here, and the world just kind of calmed down. Clinical findings, lab values, symptoms all started making sense. They gave me the resources to help live gluten-free, gave me internet sites to look up, and sage advice.

I agree with Patti -- try going gluten-free. You need to watch for "hidden gluten" (i.e. soy sauce), and things of that nature, but if you have decreased symptoms and you feel better after 6-8 weeks (I'm just basing that upon general healing times, although my GI says that the GI tract actually turns over in approximately 2-3 weeks), then the proof is in the pudding!

Again, welcome, and take care. Also, I hope you FEEL BETTER soon!

Lynne

happygirl Collaborator
happygirl
Posted

You may not have Celiac, but you could be non-Celiac gluten intolerant. Try taking gluten out and see how you feel.

I don't know what to tell you, but it might be worth finding a Celiac SPECIALIST in your area. General GI specialists do no good unless they are knowledgable about Celiac.

All that being said....welcome to the board! We are happy to have you here. Feel free to ask any questions. And read, read, read...there is so much valuable info on this board! Let us know what we can do to help.

lindalee Enthusiast
lindalee
Posted

You have been through alot and if you think you might have celiac, I hope you try the diet. I went on a healing diet very easy to digest plain foods and avoided all soy, dairy except yogurt and sour cream and eliminated all night shades. There is a tremendous amount of info here. I wish you healing and the answers you need. :)

Lymetoo Contributor
Lymetoo
Posted

Definitely try the diet!!!!! You could also get tested thru Enterolab. Someone here can give you that link. I felt better in a WEEK of going gluten-free. It could take you much longer, but it's worth a try!!

corinne Apprentice
corinne
Posted

The "increased intraepithelial lymphocytes extending to the villous tips" suggests to me that this may be lymphocytic colitis. This type of colitis is very rare (1 in about 100 000) so your doctor may not be familiar with it. There are very similar symptoms to celiac and it can often be treated with a gluten free diet.

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Ursa Major Collaborator
Ursa Major
Posted
The "increased intraepithelial lymphocytes extending to the villous tips" suggests to me that this may be lymphocytic colitis. This type of colitis is very rare (1 in about 100 000) so your doctor may not be familiar with it. There are very similar symptoms to celiac and it can often be treated with a gluten free diet.

I agree. But I also believe that it can be caused by gluten intolerance. So, no matter what, trying the gluten-free diet would be the next step. Doctors have been useless, time to take things into your own hands. If you start feeling better on the gluten-free diet, you'll have your answer.

SchnauzerMom Rookie
SchnauzerMom
Posted

Hi, I'm glad you joined us. I agree with everyone try the gluten free diet. It won't hurt you and chances are good that it would help. It takes a while to learn but there is a lot of information here to help you.

LindaJoy Newbie
LindaJoy
Posted
  • Author

Wow, what a welcome. Thank you. I feel at home here already@

Yes, I've been gluten-free for three days now, and maybe it's my imagination or just wishful thinking, but I feel like I have a bit more energy. My guts are still EXTREMELY sore, I still have diarrhea and back pain, but I know it will take awhile for my guts to heal.

I have a question. Give me time and I'll come up with a million more, but for right now, I have a question about the increased lymphcytes. I thought I had read that lymphocytes increase with any celiac person. Is that right, or did I read that wrong? I know I saw that lymphocytes increase with refractory sprue, and that scared the heck out of me. I hope I don't have that.

Anyway, do lymphocytes increase in people with celiac?

Thanks, everyone. I"m so glad I found you all!

Linda

Jestgar Rising Star
Jestgar
Posted

I don't know the answer as a general statement, but I know that my blood yields boatloads of PBMCs when I donate for someone's experiment. On the other hand, another guy in the lab who probably has dh, but just ignores it, has the lowest yield of PBMCs. So, maybe the answer is "it depends..."

LindaJoy Newbie
LindaJoy
Posted
  • Author

Oh, I'm sorry. I don't think I was clear about the lymphocytes' location. They were found in my small bowel, during biopsy, along with neutrophils and some inflammation. I know the neutrophils are probably rearing their little, short-lived heads because of the inflammation, but the lymphocytes in my small bowel are my concern.

I looked up lymphocytic colitis. Thanks for the suggestion. I do have the symptoms; they're the same as in celiac, and too, the colitis comes as a result of another autoimmune disorder. Guess what the number one disorder was that they attached to lymphocytic colitis--celiac.

A gluten-free diet is definitely in my future. Right now I'm living on beef and pork, both shredded very minutely since I also have gastroparesis, Jell-o, and millet or buckwheat bread. Ugh. I need to get to the store!

Linda

mommida Enthusiast
mommida
Posted

I just want to add to the other's posts. Make sure you go through your personal hygeine products. I made myself sick early into the gluten free diet from lipgloss.

L.

Nancym Enthusiast
Nancym
Posted

This doctor has some info on lympocytes in his blog: Open Original Shared Link

Riayn Newbie
Riayn
Posted

You may also want to get tested for fructose intolerance. The symptoms are very similar to what you described and one of the things you can't get if you do have it is wheat. The test is a simple H2 breath test. It may help explain why you feel somewhat better cutting out gluten, but not completely better.

Also it would help to go and see a dietician to work out a healthy gluten-free diet for you.

Best of luck, I do hope you are feeling better soon.

happygirl Collaborator
happygirl
Posted

just wanted to ask...was the lymphocyte stuff in your small intestine or colon? (Sorry, I was confused and wasn't sure).

I was tested twice for both types of microscopic colitis (I am having problems post-Celiac)...lympho and collangenous. I believe its damage is seen in the colon, not the small intestine (but please, correct me otherwise). Thats why I wanted to clarify. this is a basic link Open Original Shared Link

LindaJoy Newbie
LindaJoy
Posted
  • Author

Hi, Happygirl,

Yes, from what I've read, lymphocytes from colitis are in the large intestine (colon), not the small bowel, and that's where my lymphyocytes are.

From what I've been told, my my new gastro at CCF and a nurse from a celiac specialist's office in Maryland, and from several other people, including those at the Celiac Foundation, there are hundreds of things that can cause scalloping and lymphocytes in the small bowel. Celiac disease is the most prevalent of those things. I also have Eosinophilic Esophagitis, and the nurse from Maryland told me that EE could cause the scalloping I have. I've not heard of that.

I did return to the Cleveland Clinic for more testing a few days ago. My doctor said that they ran all of the celiac blood work, even the one to show if I have the antibodies that will make sure the tests are accurate, and he's sure I don't have it. A woman from the Celiac Foundation said pretty much the same thing.

I'm being tested for parasites, infections, bacteria and viruses, I think.

Also, does anyone here have a high IgE level?

Linda

happygirl Collaborator
happygirl
Posted

An elevated IgE level is often associated with the various eosinophillic disorders.

Have you seen www.apfed.org? You may have eosinophilia in other parts...your stomach, intestine, or colon, not just your esophagus.

Susanna Newbie
Susanna
Posted

Hey, Lindajoy--I think that as you continue to investigate what issue you truly have, I agree with the others that you should go gluten free immediately, because the tests for celiac are not 100% precise. Meaning, your tests could come back negative and you could still have the disease. Medicine is not a black and white science. One theme heard here on these boards is that many MANY celiacs never get a clear diagnosis, but in desperation, they try the gluten-free diet and it fixes their GI problems.

I say, try the gluten-free diet, BUT COMMIT TO IT FOR AT LEAST A 6 MONTH TRIAL PERIOD, because it takes months to adjust emotionally to eating in this different way, it takes months for your gut to heal and for you to feel all the way better, and it takes months to learn how to live gluten-free. My poor brother, tested neg for celiac, but I'm sure he has it--tried the gluten-free diet, and DID FEEL some better right away, but it was a hassle, and his doctor kept insisting the did not have celiac, and he felt left out at work parties when he couldn't eat their food, so he quit the gluten-free diet after a month. Guess what happened? All his symptoms came back full force! So, if you're going to do gluten-free diet, you really gotta DO it all the way, for a period of months.

When I hit the 6-month mark on my gluten-free diet, I had become so comfortable with it that I would'nt want to live any other way. It's easy for me now, but it wasn't in the beginning. Stick with it.

Good luck!

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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