Back On Gluten

[Gerri]

I was off gluten for 3 weeks. It was nice to have no more constipation. My liver enzymes came down, and so did my cholesterol. My Gastro doctor thought this was great. I told her that my Celiac tests came back negative. She said that not all people show positive in blood work, that I would have to have an biopsy. She also said that I could still have Celiac, being constipated all the time.

I am now starting back on gluten. I was starting to like the fact my bowels weren't sore from constipation. My biopsy will be for September 4th. I am to have one bread today, two tomorrow, three the next day up to five bread a day until the day of the biopsy.

Hugs

Gerri

[MELINE]

I didn't do it Gerri....I just couldn't. Many of us didn't. I had eczema every day of my gluten diet. So it is up to you. But if you are not 100% sure that you are responding to the diet maybe you should try it. Just keep in mind that after going gluten free and then starting eating gluten again your symptoms may come back worse.

Let us know how you are doing.

Meline

[Gerri]

Hi Meline,

I started with one bread for dinner, and within fifteen minutes of eating the bread, I had cramps in my left side. I have to continue. I have to have the diagnoses. I am on disability, and if I am celiac, then the government will help with the costs, of the diet.

I believe it's going to be interesting going back on gluten.

Thanks

I will let you know how it goes.

Hugs

Gerri

I didn't do it Gerri....I just couldn't. Many of us didn't. I had eczema every day of my gluten diet. So it is up to you. But if you are not 100% sure that you are responding to the diet maybe you should try it. Just keep in mind that after going gluten free and then starting eating gluten again your symptoms may come back worse.

Let us know how you are doing.

Meline

[MELINE]

I must admit that it is a big deal having the official diagnosis. The gluten free diet is very expensive, it is hard for me too....So all I can do is wish you good luck!!!

[Jestgar]

I have to have the diagnoses. I am on disability, and if I am celiac, then the government will help with the costs, of the diet.

Gads. Heinous.

The best of luck to you.

[Gerri]

I must admit that it is a big deal having the official diagnosis. The gluten free diet is very expensive, it is hard for me too....So all I can do is wish you good luck!!!

This is only after the first bread. My control severe sleep apnea jumped into overdrive last night. This morning I woke with severe pain in my right liver area, lots and lots of gass. Only one bread

I guess it's going to get crazy here.

Hugs

Gerri

[Gerri]

Gads. Heinous.

The best of luck to you.

Hi Jestgar

Thanks, I think I am going to need much luck.

Hugs

Gerri

[ravenwoodglass]

Please be sure to let the doctor know when things get severe. I am so sorry that your doctors are putting you through this. You have had a good response from the diet and up to 30% of us show negative on blood testing. I do hope that the 3 months of illness that you have ahead of you give the desired result. Celiac is the only disease where folks have to be in the end stages, total villi destruction, in order to get a diagnosis. Please be aware that even after poisoning yourself for 3 months the biopsy may show up negative. You have 22 ft of small intestine and damage can be patchy and if the right places are not biopsied you will have a false negative. Dietary response and positive results (you get very ill) from a challenge are a valid diagnostic tool. Be sure to let your doctor know that the challenge results were positive and do not downplay the effects. I am even going to suggest that you keep a diary of your gluten injestion and all your symptoms on a daily basis. Then when all is said and done those diaries should go to the medical 'powers that be' in your countries medical community. Maybe if they saw what is being done to us and all the pain and damage they might open their eyes someday and not make us critically ill to diagnose us. IMHO when symptoms get severe the challenge should be stopped and a diagnosis should be given.

[Gerri]

Please be sure to let the doctor know when things get severe. I am so sorry that your doctors are putting you through this. You have had a good response from the diet and up to 30% of us show negative on blood testing. I do hope that the 3 months of illness that you have ahead of you give the desired result. Celiac is the only disease where folks have to be in the end stages, total villi destruction, in order to get a diagnosis. Please be aware that even after poisoning yourself for 3 months the biopsy may show up negative. You have 22 ft of small intestine and damage can be patchy and if the right places are not biopsied you will have a false negative. Dietary response and positive results (you get very ill) from a challenge are a valid diagnostic tool. Be sure to let your doctor know that the challenge results were positive and do not downplay the effects. I am even going to suggest that you keep a diary of your gluten injestion and all your symptoms on a daily basis. Then when all is said and done those diaries should go to the medical 'powers that be' in your countries medical community. Maybe if they saw what is being done to us and all the pain and damage they might open their eyes someday and not make us critically ill to diagnose us. IMHO when symptoms get severe the challenge should be stopped and a diagnosis should be given.

Thanks for the advise. I have started a diary, and at that rate I will have a lot to show my GASTRO. After this morning waking up to severe cramps in my liver area, wasn't one bit funny. Then try and have a bowel movement, not at all pleasant. Brain fog already starting. Oh yeh, asthma, increasing. I hope this diary works and I don't have to go through biopsy, but only time will tell.

Going to have gluten earlier today. Was going to have it at dinner, will think about having it at lunch instead. (2 bread today).

Hugs

Gerri

[kbtoyssni]

Would it be possible for you to find a new doctor who will diagnose based on dietary response? There are a few of them out there, and that would certainly be better than you making yourself sick for a few months hoping to get a positive at the end of this.

[home-based-mom]

I'm not sure why you think the diet is so expensive as fresh and frozen meats and produce are far less expensive (and healthier) than processed foods and gluten replacements just are not necessary. Nice, but not necessary.

Nevertheless, if you are determined to go through with this, may I suggest that you have someone check in on you several times a day. Your health sounds like it is going from tail spin to nose dive and a crash landing is likely to come long before September.

[ravenwoodglass]

I'm not sure why you think the diet is so expensive as fresh and frozen meats and produce are far less expensive (and healthier) than processed foods and gluten replacements just are not necessary. Nice, but not necessary.

Nevertheless, if you are determined to go through with this, may I suggest that you have someone check in on you several times a day. Your health sounds like it is going from tail spin to nose dive and a crash landing is likely to come long before September.

I have to agree strongly with this. Based on my own experience I would even advise that you make sure you have your cell phone on you at all times. Especially at night. Also if you find you are being woken up by severe cramps and D call your doctor the next day. Many doctors think we just have IBS but don't let us know that being woken by your system needing to violently clear out is NOT a symptom of IBS.

I also have found that I spend less at the grocery store. The savings on processed foods more than makes up for the amount I might spend on 'specialty' bread and pretzels. It does kind of even out but does take some getting used to if you are used to using processed stuff. A rice cooker and a crockpot can help out a lot.

[Lockheed]

I salut you for putting yourself through the torment. Good luck to you and I hope you get your confirmed diagnosis!

[Gerri]

Would it be possible for you to find a new doctor who will diagnose based on dietary response? There are a few of them out there, and that would certainly be better than you making yourself sick for a few months hoping to get a positive at the end of this.

Here in Canada, it's hard to find a family doctor, it's up to your family doctor whether you should be referred to a specialist, and they are not readily available to you. I will keep the diary and will present to my Gastro.

Hugs

Gerri

[Gerri]

I have to agree strongly with this. Based on my own experience I would even advise that you make sure you have your cell phone on you at all times. Especially at night. Also if you find you are being woken up by severe cramps and D call your doctor the next day. Many doctors think we just have IBS but don't let us know that being woken by your system needing to violently clear out is NOT a symptom of IBS.

I also have found that I spend less at the grocery store. The savings on processed foods more than makes up for the amount I might spend on 'specialty' bread and pretzels. It does kind of even out but does take some getting used to if you are used to using processed stuff. A rice cooker and a crockpot can help out a lot.

Central Auditory Processing Disorder (Severe), Severe Obstructive Sleep apnea, Narrowing Airway and Broncial Asthma, GERDS, IBS, Leaky Gut, NASH (found because of elevated liver enzymes), Lung damage (scar tissue), Diabetic (Gastro wants me on Insulin because of my allergies), Psoriasis, Hepatitis (A), Sjogren

[Gerri]

I salut you for putting yourself through the torment. Good luck to you and I hope you get your confirmed diagnosis!

So far this afternoon, other than increase in asthma, tired, more arthritic pain, and much gas. Brain fog, is getting bad again. Nearly put things in fridge that should be in dishwasher. In tear this afternoon, so that means my depression is back.

After September 4th, diagnosis or not I am back on the Gluten Free diet. I already had positive responses from going gluten free.

Hugs

Gerri