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For Those That Had A Biopsy.

Jeffiner

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Jeffiner Apprentice
Jeffiner
Posted

How detailed of a result did you get? Did the doctor just look for the celiac disease or did they look for other conditions associated with it at the same time? Did you just get a simple, "you have celiace disease" ? What kind of information did you get?

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Roda Rising Star
Roda
Posted

How detailed of a result did you get? Did the doctor just look for the celiac disease or did they look for other conditions associated with it at the same time? Did you just get a simple, "you have celiace disease" ? What kind of information did you get?

Here is my pathology report from my small bowel biopsy:

DIAGNOSIS

Duodenum, 3rd part, biopsy:

1. Duodenal mucosa with acute and chronic inflammation and villi blunting. See comment.

2. Negative for parasites and malignancy.

Comment

The boipsy demonstrates lamina propria expansion with predominately chronic inflammation consisting of lymphocytes and plasma cells. Neutrophils are also present within the lamina propria and crypts. Villi blunting with focal crypt hyperplasia is seen. Increased intraepithelial lymphyocytosis is mild and is below that which woud be expected in celiac disease. However, serologic testing may be warrented if there is clinical suspicion of a gluten sensitive enteropathy as serologic changes precede clear cut histologic changes. No evidence of parasites is seen. Clinical correlation is required.

This was Oct. 24, 2008. When I had the egd they also took a biopsy in the stomach for H pylori and it was negative. I was also told I had distal esophagitis and a small hiatal hernia. I had already had a positive tTg a month before this and the GI doctor called to tell me that the duodenal biopsy was consistent with early celiac sprue. I've been gluten free since.

plantime Contributor
plantime
Posted

When I got my diagnosis, the doctor was looking for ulcers. He found red inflamed patches, so he took biopsies from them. The only report I got was the referring doctor reading me the lab's conclusions, that the villi were blunted, indicating celiac disease. By that point, however, I had been telling doctors that I have celiac disease, and I had been following a glutenfree diet. I think the doctor figured all I needed to know was that I was right, and that I needed to keep following a glutenfree diet.

Reba32 Rookie
Reba32
Posted

I got color photo print outs of everything from my throat on down! Each photo is captioned to explain what it is, and what the doctor saw in it. I've got a medium hiatal hernia, atrophy and erythmea in the second part of the duodenum and erosions in the antrum and distal body.

No ulcers though! :D

At my follow up, the PA said that all of it was positive for Celiac Disease, but on the 1 to 5 scale that they normally use, I was only a 2 for intestinal damage. However, that was after a 7 or 8 week gluten challenge, after I'd been gluten free for about 9 or 10 months!

So yes, I'd say gluten can do it's damage quite quickly and quite handily!

Jeffiner Apprentice
Jeffiner
Posted
  • Author

Thank you for the replies. I forgot to subscribe to my thread so I didn't realize anyone had replied yet. :) I am just hoping that he checks for everything while he is in there.

Peace41 Rookie
Peace41
Posted

Thank you for the replies. I forgot to subscribe to my thread so I didn't realize anyone had replied yet. :) I am just hoping that he checks for everything while he is in there.

Hope he does for u too. For my experience I went to an ENT first to make sure there was no obstruction in my throat and the Ent said everything was fine along with the tests, but the Gastro guy, told me I had dysphagia, along with the endo and dilatation they did the biopsy, and told me he would take a good look at my throat and everything. He then said, that he hoped the dilatation would not make it worse, that didn't make me feel very good. But I had it, and and I first got a photo with a written out quick report with a diagram and that they will then follow up with a more detail report to my GP. When I went back the week later, he told me that something came back from the biopsy, but I had to wait a moment to know what it was. And then he said I am gluten intolerant, and I said like Celiac diseas and he said yes. And then told me I had bacteria and we couldn't do anything about that right now. He also told me I had lining damage but I forget in which part of the digestive system, probably the bowels. And on the written report it came back with Esophgigitis and Gastritis, to go along with the gerds I already have and IBS and everything else. He did not go thrugh it thoroughly with me, but I am going to leave that for me to go through it throughly with my doctor, who is excellent. And said that we are only going to de the dilatation and diet at present, I can't have antibiotics. And deal with it, very slowly, one thing at a time. But I am also going ahead to get allergy tested as well.

Its worry before u go through it, but afterwards its good to know exactly what u r dealing with, and then u can work with that. So hope it all goes well with u, if u feel up to sharing, u can update us.

I am having another dilatation of friday and they got written down and endo, so I have to make sure they just do the dilatation.

Peace 4 1

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

      By trents · Posted

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

      By catnapt · Posted

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • 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
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
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