Getting Ready For The Biopsy

[spoticus]

I had eliminated gluten for three weeks (maybe three and a half total) in July in order to see if some of the ailments I had been suffering from would go away. Sure enough they did. The day I reintroduced gluten back in I thought i swallowed knives( a friday). I didn't have gluten the next day but still suffered from horrible tummy cramping and heartburn and burping. I knew by Sunday I'd be talking to the dr Monday. So I followed her suggesting and started eating gluten regularly Aug 4. For days I didn't know if I was going to vomit, or run have "D"....my tummy ached and was tender until the 18th.... I saw my dr again that day. She ordered a biopsy for Sept 29th. I am diligently eating a couple pieces of bread a day until then.

My question is this... First I had the horrible reflux an burping and tummy pain and constipation troubles only to be followed by diarrhea. Acne came back... After 7 days my joints became tender again to use and to touch (in my hands) and I got a huge migraine. Then the puffiness came, in my hands, feet, eyes, sinuses... The aching in my joints and muscles have been awful.

However, the threshold seems to keep moving up. So as of today I do not get stabbing stomach pains. I sometimes have a wave of nausea, but I can eat, although nothing sounds good. I can tolerate my joints today, I just do not feel motivated or energetic.

So it has evolved from intense reactions to tolerable from Aug 1 to Aug 21.

Is this normal for some?

I'm overwhelmed with the possibility of this being celiac but I'm equally overwhelmed if it isn't because I felt so wonderful when I was gluten free.

I appreciate any feedback or comments you can share.

[ShayFL]

Your tests may come back negative because you were gluten-free and could have healed in that time. Most believe a few slices of bread a day is NOT ENOUGH. And you should be eating gluten heavily for 3-4 months BEFORE the test to get an accurate result.

So here is your issue. You know that gluten-free makes you feel better and gets rid of your symptoms. What are you going to do if the tests come back negative???

Tests are just that....tests.

The proof is in the diet. You already have your answer, but only you can decide if you want to be healthy.

Letting a doctor tell you that you are not Celiac because the tests come back negative can actually shorten your life, not to mention keep you miserable.

So be prepared.....you are likely not glutened enough to come back positive.

Hopefully you will and you will have the gold standard dx and can remove the gluten again become a medical statistic.

[spoticus]

Your tests may come back negative because you were gluten-free and could have healed in that time. Most believe a few slices of bread a day is NOT ENOUGH. And you should be eating gluten heavily for 3-4 months BEFORE the test to get an accurate result.

So here is your issue. You know that gluten-free makes you feel better and gets rid of your symptoms. What are you going to do if the tests come back negative???

Tests are just that....tests.

The proof is in the diet. You already have your answer, but only you can decide if you want to be healthy.

Letting a doctor tell you that you are not Celiac because the tests come back negative can actually shorten your life, not to mention keep you miserable.

So be prepared.....you are likely not glutened enough to come back positive.

Hopefully you will and you will have the gold standard dx and can remove the gluten again become a medical statistic.

Wow - really? I can heal in 3 weeks? I had no idea... the most common thing I could find was months of gluten free.... That is good to know so I don't have too high expectations. Thanks

[Gerri]

Hi Spoticus

I am having celiac biopsy September 4th. I am to eat 5 gluten a day, which I do. I have been back on gluten since the middle of July. I can tell you it's going to get lot worse.

I have been to hospital twice, and urgent care twice.

1. liver enzymes went very high after being down to normal

2. diabetis out of control

3. increase dramatically all the symtoms your having (GERDS, leaky gut, IBS, constipation (with diarrhea chasing it out

4. vertigo

5. eyes nearly swelled shut, and aching badly (latest symptom on top of rest)

6. Kidney infection

7. lupus symtoms increase, and also sjogrens

8. Increase in pain

9. Fatigue beyond belief, right after getting out of bed in morning

10. depression, anxiety increasing

11. auditory processing disorder increasing

12. severe sleep apnea becoming worse

13. athritis pain increasing

14. bloating severe (look nine months pregnant - miracle of science - but not of celiac)

15. swelling in hands increasing

16. increase in asthma

I am not tolerating gluten any better.

After biopsy I am going off gluten and not going back on it, celiac or not. Already told by Urgent care that I was Celiac. I have to have biopsy because Gastro going to check esphogus on way through. I am concerned because of many years of severe allergies to drugs (sulfa, sulfites, sulfates, sulfur and all derivatives (which is in everything), broncial asthma, severe sleep apnea, mild copd, possibly causing cancer. Only reason I haven't given up going for biopsy.

Hugs

Gerri

[spoticus]

Hi Spoticus

I am having celiac biopsy September 4th. I am to eat 5 gluten a day, which I do. I have been back on gluten since the middle of July. I can tell you it's going to get lot worse.

I have been to hospital twice, and urgent care twice.

1. liver enzymes went very high after being down to normal

2. diabetis out of control

3. increase dramatically all the symtoms your having (GERDS, leaky gut, IBS, constipation (with diarrhea chasing it out

4. vertigo

5. eyes nearly swelled shut, and aching badly (latest symptom on top of rest)

6. Kidney infection

7. lupus symtoms increase, and also sjogrens

8. Increase in pain

9. Fatigue beyond belief, right after getting out of bed in morning

10. depression, anxiety increasing

11. auditory processing disorder increasing

12. severe sleep apnea becoming worse

13. athritis pain increasing

14. bloating severe (look nine months pregnant - miracle of science - but not of celiac)

15. swelling in hands increasing

16. increase in asthma

I am not tolerating gluten any better.

After biopsy I am going off gluten and not going back on it, celiac or not. Already told by Urgent care that I was Celiac. I have to have biopsy because Gastro going to check esphogus on way through. I am concerned because of many years of severe allergies to drugs (sulfa, sulfites, sulfates, sulfur and all derivatives (which is in everything), broncial asthma, severe sleep apnea, mild copd, possibly causing cancer. Only reason I haven't given up going for biopsy.

Hugs

Gerri

I dont' feel so alone with your story. My goal was/is at least to eat 23 g of gluten a day for the 5 1/ 2weeks I have left. What do you mean by 5 gluten a day? I don't know how to establish what equals 23grams.... there is so much information out there i.e. 1 slice of bread equals 4.8 g of gluten and 1 slice of bread equals 10 g gluten. hmmmm So i've been eating a piece with each meal and for my two snacks a day. I think I'm getting mouth sores ...

I am sooo sorry to hear of your pain - it sounds just awful. I'm worried about cancer too. I've already had thyroid cancer and hashimoto's. I would love to hear back about your biopsy and results! I hope all your hard work is enough..........I will be thinking of you...especially at night with the sweats and the constant fatigue ~ Bridget

[Gerri]

I dont' feel so alone with your story. My goal was/is at least to eat 23 g of gluten a day for the 5 1/ 2weeks I have left. What do you mean by 5 gluten a day? I don't know how to establish what equals 23grams.... there is so much information out there i.e. 1 slice of bread equals 4.8 g of gluten and 1 slice of bread equals 10 g gluten. hmmmm So i've been eating a piece with each meal and for my two snacks a day. I think I'm getting mouth sores ...

I am sooo sorry to hear of your pain - it sounds just awful. I'm worried about cancer too. I've already had thyroid cancer and hashimoto's. I would love to hear back about your biopsy and results! I hope all your hard work is enough..........I will be thinking of you...especially at night with the sweats and the constant fatigue ~ Bridget

Hi Bridget, 1 bread equals one gluten - one cup of pasta one gluten (I believe) - I am to have five gluten a day. I didn't eat that much gluten before setting up for celiac biopsy. If your saying 4.8 g for one bread and your going up to 23 grams that means about six slice of bread. Man I have to eat one more bread.

I believe I have thyroid problems, but my doctor just won't listen. Also have a cyst on my adrenal gland.

Bridget, I will be thinking of you --- I have nice air conditioning - wear next to nothing so no sweats - besides don't sweat even during hotest days, when outside, wearing long sleave shirt.

Oh we are going to fine shape for the biopsy. Hugs

Gerri (tashabear@hotmail.com)

[gfp]

I dont' feel so alone with your story. My goal was/is at least to eat 23 g of gluten a day for the 5 1/ 2weeks I have left. What do you mean by 5 gluten a day? I don't know how to establish what equals 23grams.... there is so much information out there i.e. 1 slice of bread equals 4.8 g of gluten and 1 slice of bread equals 10 g gluten. hmmmm So i've been eating a piece with each meal and for my two snacks a day. I think I'm getting mouth sores ...

I am sooo sorry to hear of your pain - it sounds just awful. I'm worried about cancer too. I've already had thyroid cancer and hashimoto's. I would love to hear back about your biopsy and results! I hope all your hard work is enough..........I will be thinking of you...especially at night with the sweats and the constant fatigue ~ Bridget

Can I ask WHY you want to do this?

1) A negative biopsy for celiac disease is not definitive unless its post mortem.

2) A biopsy can be done to look for other things (such as cancer) without needing to eat gluten. Indeed it will be easier to see in there without all the inflamation.

3) Eating gluten is making you ill, after he biopsy will you keep eating it even if it makes you ill and the biopsy is negative?

[spoticus]

Can I ask WHY you want to do this?

1) A negative biopsy for celiac disease is not definitive unless its post mortem.

2) A biopsy can be done to look for other things (such as cancer) without needing to eat gluten. Indeed it will be easier to see in there without all the inflamation.

3) Eating gluten is making you ill, after he biopsy will you keep eating it even if it makes you ill and the biopsy is negative?

Sure - of course..

Since medically speaking the gold standard for a positive dx for an MD is the duodenal biopsy as well as supporting labs, I am willing to "play along" so that I can be heard by the medical community when I say - no thanks, I would not like medication to treat the symptoms for migraines, more medications for allergy symptoms, more medications for arthritic joints.... Or more importantly more suggestions that I need anti-depressents for these unsubstantiated claims of aches and pains and tiredness.

Personally I have found my experiences w/ medicine to be pretty barbaric a lot. For 9 years in a row in order to prepare for thyroid whole body scans I had to withdraw from all synthroid for 4 to 6 weeks prior to the scan. This meant again, aches, pains, lethargy, cold, memory issues..... the consequences of that could also be measured for months after the event (i.e. cholesterol, depression). Preparing for these events also called for a special diet that was iodine free.

Any support (financially or by government) that I could potentially get would require an official dx approved by the governing agencies, if you will. And since Dr.Fine's methods are still unvalidated and not generally accepted as 'true' results.. I am playing along like a good patient.

I've lived 38 years feeling awful... and the three weeks were pretty darn awesome (gluten free)...6 more weeks of living in discomfort, pain, etc etc... is a blip on the screen of a long life if it gives me a chance for a positive show and explanation of years of asking for help.

However - on the flip side- Sept 30 positive result or not - i'm gluten free. I will of course take into my hands control of my general well being. I could not walk this walk, and do this if it weren't for communities like this that irregardless of what happens at the dr's office in Sept - I can turn to for help and guidance.

That's it in a nutshell really.

[glutenewbie]

My biopsy results were negative, even though my blood test was positive. I had increased my gluten intake for a few weeks before the biopsy, but prior to that I was gluten-free for a while. I really don't think I included enough gluten in my diet to make the results positive. I just didn't want to feel so bad that I couldn't function! So if you're getting a biopsy soon, make sure you eat as much gluten as you can (I would suggest every meal). Good luck with your biopsy!

[Luhts]

My biopsy results were negative, even though my blood test was positive. I had increased my gluten intake for a few weeks before the biopsy, but prior to that I was gluten-free for a while. I really don't think I included enough gluten in my diet to make the results positive. I just didn't want to feel so bad that I couldn't function! So if you're getting a biopsy soon, make sure you eat as much gluten as you can (I would suggest every meal). Good luck with your biopsy!

Do doctors make you go gluten free and then go back on just to torture you? It makes no sense! If the blood test is positive, why don't they do the biopsy right away, before you go gluten-free?