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Can 1 1/2 Weeks Of Gluten-free Affect Biopsy Results?


LyndaCanada

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LyndaCanada Rookie

Hi Everyone

Another question from the newbie. I have had one biopsy that the doctor wrote "highly suggestive of celiac" on the report but yet I tested negative on the Celiac blood serum test or whatever it's called. When the biopsy was done(December 18th) and when the blood test was done I was NOT gluten-free.

I was advised to start a gluten-free diet from a clueless emergency room doctor. I know he meant well but now I've screwed up everything for my future testing from what I understand.

I'd only been gluten-free for barely a 1 1/2 weeks and I went to the gastrointestinal doctor yesterday and he wants to do another biopsy, not really sure why, maybe to make sure it's not just an infection? So he wants me to GLUTEN up for the next 3 days. I had my first gluten in about 10 days last night, one bun and some regular lasagna and I was sooooooooooooo sick last night. He's told me to eat a loaf of bread each day for the next two days since my biopsy is on Monday. My question is will going gluten free for a 1 1/2 weeks really make that much difference on the biopsy? I know the blood test will be affected but I always thought that damage done to your intestines doesn't heal right away? Quite frankly, I'm scared out of my wits to eat all of the bread this weekend that he's told me to give how sick I already am from such a small amount? Is this really necessary? I have 2 little girls that are going to have one horrible weekend because I am quite certain I'm going to be severely ill from this? Has anyone ever had to do this, is it standard practice?

What can I do, my butt(sorry to be graphic) is already on fire, I walk like I have a pole up there and I'm just soooo nauseated. My dh knows how sick I'm going to be so he bracing himself for the worse.

HELP!!

Lynda


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Electra Enthusiast

Man I wish I could answer this for you, but I really can only tell you what I have heard.

I have had a knowledgeable Celiac tell me that it takes 6mths for the average Celiacs intestines to heal after ONE gluten ingestion. Now I'm not sure how accurate this info is and I'm not sure I completely believe it, but what Is hard for me to understand is this........

I know that I have only been gluten free for about 3 weeks, but before that I was hospitalized in pain a few times and was having altheimers like symptoms, so when my blood tests came back positive I cut out gluten because I was LITERALLY "losing my mind". Now if it takes 6 months for your intestines to heal from one ingestion then it should be much easier for them to detect it on a biopsy right? But if they can't detect it that easily then why do we have such severe reactions when we ingest the food? If it's not doing enough damage for them to see on a biopsy then why is is causing us so much pain? I just don't get it?

This is starting to drive me INSANE!! How in the world can they say that gluten can kill a celiac if enough is ingested yet they can tell you to keep eating it until they can PROOVE it's Celiac. Isn't the proof in the fact that you get so ILL when you eat it? I never used to get sick to my stomach so I'm not sure how that would be, but I get complete behavioral changes (almost like I have split personality) I black out and I have tons of rib pain, foot, and muscle pain, migraines and other symptoms!! I'm a completely different person when I'm ingesting gluten and my children will even tell you they DO NOT like the gluten side of me!!

Sorry to go off on a tangent here. I guess my point is that you are poising yourself by eating gluten, and you are risking all kinds of bad things by eating it, so I would ask the dr. if the biopsy is necessary, because it's not worth damaging your body over (especially if it's going to come up negative because you weren't on gluten long enough)!!

Good Luck and let us know what you find out!!

rez Apprentice

I definitely do not think being gluten free for a week and a half could affect a biopsy. That would be some darn quick healing. I think why they can't diagnose Celiac by biopsy a lot of the times is because some people are gluten intolerant but not Celiac, and some docs only look for stage 4 totally flattening villi. It starts with cells creeping in at stage 1 that need to be stained and looked at under a microscope. I would go ahead with the biopsy and also have them do a total Iga serum test to see if you are Iga deficient. I think you should get a second opinion w/ the biopsy and then you will have peace of mind. Good luck.

tiredofdoctors Enthusiast

According to my GI doc, being gluten-free for even three weeks can affect a biopsy. It can't affect the BLOODWORK, but he said that the intestinal tract has an extremely high cellular turnover rate. He didn't even want me to be gluten-free for the four days that I was going to wait to have my endocscopy. This is just what my doc said. Hope it helps.

lovegrov Collaborator

Let me make it clear that I DO NOT have a link or scientific proof. I'm not trying insult or humiliate anyone or try to prove I'm better or more knowledgeable.

I don't think that 10-11 days off gluten will mess up a biopsy. I'm also pretty certain that it does not take the average person with celiac six months to recover from one ingestion. People who research celiac will tell you that everybody is so different that you simply can't make a blanket statement. Some people with celiac will suffer no consequences from one slight ingestion, while others will suffer greatly. But all should avoid gluten because there's no telling which you are.

richard

Nancym Enthusiast

The thing is, you do have the antibodies to gliadin in your intestines for a long, long time after ingesting gluten. Like 2 years or more. Dr. Fine from Enterolabs is doing a lot of data collection on this and presented it in his lecture. It does drop off if you're gluten free, but eating more obviously increases it. So while you may not have overt illness you can directly attribute to eating gluten every now and then, it might be working in more insidous ways.

I don't know if 3 days of eating gluten is going to do it. Probably not, the recommendation Dr. Green another other respected celiac doctors is 3-6 months of heavy gluten ingestion.

Willow5 Rookie

A loaf of bread sounds like a lot! Most places recoment 2-4 slices a day for a pre-test dose!


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Amica Newbie

Lynda- I just came to this messsage boardto this site hoping for an answer to the same question!!

:( I started having problems about 7 years ago. At first, I had occasional discomfort and diarrhea. They gradually worsened, and I began to tie them to specific foods, particularly acidic and greasy foods. I switched to low orange acid juice, then stopped drinking it at all, and cut tomato sauces from my diet. If I ate these foods, I would have severe stomach pains that would send me to the couch, followed by diarrhea. I also had less predictable periods of constipation and diarrhea. When things continued to worsen, I finally saw my physician. He immediately considered celiac disease as a possibility, and ordered bloodtests. The tests showed that my gluten antibodies were at a high level, but nothing else was wrong (no anemia, etc.) He referred me to a GI doctor. But since the whole thing was happening during the holidays (Christmas and New Years) it was a few weeks until I met with the GI doc and had a biopsy. In the meantime, I started myself on a gluten-free diet. I hit up all the health food stores in my area, began searching for recipes, trying to explain the disease to my family and friends. But then...

:blink: My biopsy results came back negative. The doctor told me that I had a "sensitivity" and not an "intolerance," so consuming gluten wouldn't be detrimental to my health. He said I was free to eat whatever I wanted to. I was simply shocked because my symptoms had disappeared on the diet... I even found that I could breathe easier when exercising. This diagnosis was all about 3 years ago.

:huh: Now, I have a "low gluten" diet (I don't eat pastas or breads, but share normal condiments with my family and snag the occasional cookie). I don't have the same GI symptoms I had before. However, I have always had a constant doubt about the diagnosis in the back of my mind. I have since read many articles that stress the importance of being on a normal diet containing gluten when having a biopsy. I have also become aware of the diverse symptoms and stories of celiac disease... some people have almost no symptoms while some are extremely ill at the slightest contamination.

While I generally feel OK now, my concern is that I could have a case of celiac with less dramatic symptoms, and it could go undiscovered for a long time since I have a "low gluten" diet. I have struggled to find any information about "gluten sensitivity"... except that there is no research on whether a sensitivity can develop into celiac disease. And, as many have posted, there is conflicting information on how long it takes for intestines to heal on a gluten-free diet, or become damaged while consuming gluten. When I expressed some doubts to my GI doctor, he said that he could do more blood tests while I was on the two diets, but since I already had a positive test, I'm not sure how that would make the situation any more clear.

:unsure: If anyone has any information on "gluten sensitivity" or advice on testing/diagnosis, please share!!

-Amy :D -

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    • catnapt
      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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