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Doc Wont Say Celiac For Sure...pretty Sure I Am..

TJ060306

By TJ060306
in Coping with Celiac Disease

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TJ060306 Apprentice
TJ060306
Posted

I have had a couple of procedures over the past year or so. My GI doc is sort of old school. I orignally had a endoscopy because of gerd symtoms (symptoms). The first bx was positive for celiac and EOE. Doctor did celiac panel negative. The only numbers that were off were low vit D and low iron. So he gave me meds for gerd and EOE and sent me on my way.Well I was still having bloating and constapation isssues so a colonoscopy we did. That looked comeplete normal. But he said the bx were microscopic colitits. I dont think thats what the pathology says. So I was given another med and sent on my way. It didnt work. So another endo and it didnt come back as celiac this time but still EOE. So he said it was ibs and EOE and was told to manage it. Well that was nov 10' flash forward to nov 11 and the same issues where still happening. (constipation, bloating, gross smelling flatuence and stools, muscusy stools, and intermitten diarhhea like once a week). So another endo we went in nov 11 and again this time positive for celiac EOE. So the doc said well maybe it is celaic try gluten free. He did a blood test again neg for celiac but again low iron. I have been trying to do gluten free but i think i keep get glutened some how. I almost dont feel any better and its been 2 months. I think it may be time for another colonscopy but I am in nursing school and can not do one until july. I sometimes wonder if maybe it is chrons i have. Any input would be greatly appricated! I am pretty sure I have celiac but the way the doc is so like well lets see how a gluten-free diet works, makes me question is it? I am in the process of waiting for another gi doc.

Thanks

Janelle

10/25/10

Duodenal

biopsies: Duodenal

mucosa with villous blunting and numerous intraepithelial lymphocytes.

Gastric

Biopsies: Mild to moderate chronic gastritis.

Esophageal biopsies: Eosinophilic esophagitis.

12/22/10 Colon

Terminal ileum biopsies: No diagnostic abnormalities recognized.

Random colon biopsies: Mild acute and chronic colitis with focal cryptitis.

1/24/11

Duodenal Biopsies: Focal Brunner's gland hyperplasia and mild chronic duodenitis.

Esophageal biospies: Esophageal squamous mucosa with subacute and chronic inflammation.

12/19/11

Duodenal Biospies: Fragments of duodenal mucosa with areas of villous blunting, intraepithelial lymphocytes, along with actue and chronic duodenitis.

Gastric biopsies: Fragments of gastric fundic and antral mucosa with chronic inflammation along with areas of regenerative/reactive glandular atypia.

Esophageal biopsies: Fragments of esophageal squamous mucosa with basal layer hyperplasia and slight subacute and moderate chronic inflammation. .

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Metoo Enthusiast
Metoo
Posted

You had two biospies positive for celiac, but because the bloodwork was negative your doctor refuses to diagnose you with celiac?

If my above interpretation of your post is true, your doctor is an idiot. You have celiac from the sounds of it. It takes many people 6months to 1 year to feel better...and if you are not very careful of the diet you won't feel better.

BabsV Enthusiast
BabsV
Posted

I thought a positive biopsy was the "gold standard" for diagnosing Celiac Disease...or at least that is what my doctor told me!

She also told me that it would be a minimum of 3 months of being on the gluten-free diet (very strictly) before I could feel any improvement and it was more likely to be 6-12 months to really notice any significant change. For me it was small increments of healing...and I am still doing so at 7.5 months post-diagnosis. Am I now better than I was prior to diagnosis? Absolutely. Am I back to 100%? Not even close. But I keep a list of the symptoms that are improving and when I start to fret that I'm not getting better I pull it out and see that yes, I am getting better. It is just taking longer than I would like.

I'd say you definitely need a different doctor to review all your results. Go to the doctor forum here at Celiac.com and post for recommendations for your city/area...you might get lucky and find someone great! I hope so.

cyberprof Enthusiast
cyberprof
Posted

It looks to me like you have celiac, Eosinophilic esophagitis and colitis.

There are some diseases that cause vilious blunting, but just because your blood tests are negative does not mean that you don't have celiac. The blood test is unreliable as an exclusionary device. Someone here might be able to tell you what causes blunting besides celiac but it is pretty rare.

You are a nursing student, so I hope that you can find a GI/celiac specialist that takes you seriously. Going truly, strictly gluten-free in the mean-time would be a good way to help you feel better. Three years is too long to feel bad. Hang in there.

Oh, and BTW any blood tests for celiac while on a gluten-free diet (or just gluten-light) will be negative by definition.

mommida Enthusiast
mommida
Posted

Latest medical findings say that Eosinophilic Esophagitus and Celiac are related. New diagnoses of EoE should be screened for Celiac.

Are you trying to manage the EOE with diet? If you can figure out what your food "triggers" are, and start avoiding them.

Celiac diagnoses starts with a gluten free diet immediately, when testing is done.

You should have been reffered for allergy testing too. (Most case of EOE show not true allergic reactions, but it can help you avoid other foods that make healing even harder.)

For the elimination diet avoid all top 8 (wheat, eggs. fish, shellfish, peanuts/ nuts/ , treenuts, soy, and dairy), gluten, and peas. You should notice improvement at this time. If not you will have to remove any other suspected foods. When you have achieved improvement, then you challenge. To do a challenge pick the source in its purest form, ingest a reasonable amount for 3 days if tolerated. Since you have been diagnosed with Celiac, you obviously will not challenge wheat.

Keep a food journal and remember an eosinophil, once activated, is active for 12 days.

It can be done! Concentrate on the foods you can eat. Good healthy simple foods. Fruits and vegetables. We lived throught the same elimination diet described above. My daughter has been able to reintroduce some of the top 8 allergens back and is doing well with Celiac and Eosinophilic Esophagitus. :)

cyberprof Enthusiast
cyberprof
Posted

Mommida's post brought up something else I forgot. Colitis is sometimes treated with a gluten free diet, even in people w/out celiac. So with EOE, colitis and/or celiac, your best bet is to go gluten-free and you may feel better. It does take a while to become an expert at gluten-free so don't give up if you don't see results right away.

Skylark Collaborator
Skylark
Posted

It looks to me like you have celiac, Eosinophilic esophagitis and colitis.

There are some diseases that cause vilious blunting, but just because your blood tests are negative does not mean that you don't have celiac. The blood test is unreliable as an exclusionary device. Someone here might be able to tell you what causes blunting besides celiac but it is pretty rare.

Yes, looks like that to me too.

We've had a few people whose GI doctors told them that food allergies, particularly milk, could cause villous blunting. I haven't found it in the literature but more than one person has posted that. Sometimes practicing doctors see things that don't make it to the literature.

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ncallier Newbie
ncallier
Posted

According to my gi, whom I believe to be excellent, an endoscopy with biopsy is the gold standard for diagnosing celiac disease. My allergist initially diagnosed celiac disease through blood test; however, I was skeptical so I made an appointment to see my gi. He read the report from the allergist and immediately requested an endoscopy with biopsy. He doesn't really trust the blood test only; he says that a positive blood test should be followed up by endoscopy; a negative blood test with multiple symptoms should also be followed up by endoscopy.

ncallier Newbie
ncallier
Posted

She also told me that it would be a minimum of 3 months of being on the gluten-free diet (very strictly) before I could feel any improvement and it was more likely to be 6-12 months to really notice any significant change. For me it was small increments of healing...and I am still doing so at 7.5 months post-diagnosis. Am I now better than I was prior to diagnosis? Absolutely. Am I back to 100%? Not even close. But I keep a list of the symptoms that are improving and when I start to fret that I'm not getting better I pull it out and see that yes, I am getting better. It is just taking longer than I would like.

My gi didn't offer any timeline for when my symptoms would get better, but I was so in denial that I probably didn't ask enough questions. I keep feeling as though I am improving in terms of intestinal symptoms, but then feel as though I am relapsing. I am not sure whether I am being accidentally glutenized or whether this is normal healing. If you have any suggestions, advice or input, please respond.

Thanks,

Natalie

alicewa Contributor
alicewa
Posted

Was the DGP blood test done? This is pretty specific and sensitive. Perhaps you need to find out if you have a celiac gene?? You can do this after being gluten-free. :)

Jestgar Rising Star
Jestgar
Posted

There are no "Celiac genes", there are only genes associated with the disease. You can have celiac disease, but not carry any of the associated genes, or carry the genes, but never develop celiac disease.

alicewa Contributor
alicewa
Posted

There are no "Celiac genes", there are only genes associated with the disease. You can have celiac disease, but not carry any of the associated genes, or carry the genes, but never develop celiac disease.

Thanks for clarifying. I meant it in that it may help convince the doctor(s) to make a diagnosis.

TJ060306 Apprentice
TJ060306
Posted
  • Author

Thanks all for the responses....I could have caesin intolerence but I am in denial of to try dairy free ( I LOVE cheese.. :P ) I did go see an allergist whom did the food scratch testing which came back negative for all so I did the food patch testing which also came back negative...I was basically told that we may never know what causes the EE..along with "I dont think you have both celiac and EE that is rare" so I just take my flovent and hope it doesnt get worse? The only sign of EE I had was a tight feeling in my throat which I have not had since going gluten free..so I dont know if was the gluten that was causing it or what..I wont know until I have a follow up endoscopy..

I am going to beth isreal in boston..they are supossed to have a good celiac clinic..hopefully I will get some answers and a knowledgable doctor..I got scared with my last bx it looked to me like cell changes I thought I was getting cancer or something!!!! So I want to get this gi issue under control and cause no more damage...

I have a hard time with gluten free..I am always on the go so getting used to not eating out...it is a very hard change..I go to places I think are gluten free but then I think I get sick..so I dont know if I am completly gluten free....it is a uphill battle I am learning day by day...I give credit to all of you who does this and do it well...

but thank you all!

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