Might Go Back On Gluten

[whattodo]

Well as many of you know i have been having problems with my stomach for a while now. I have had all the tests done that are possible and nothing points to celiac disease.

Out of all the tests the only sign of something not quite right is the fact that my duodenum tube is slightly inflamed.

I have not eaten gluten for about 5 weeks now and nothing has changed. I still have a constant aching in my upper stomach.

The specialist said to me that if i had celiac disease that she would know even if it was in the early stages. i suggested that the inflamed tube should surely be a clear sign of celiac and she said NO. So far i have had a negative biopsy and a negative blood test. The specialist said it could just be that this is the way my stomach works. The pain not necessary is a bad thing, it just doing its thing. I can remember what she called it?

I have also found Dyspepsia on the net and that looks very similar to what i have experienced. I may ask the doctor about this when i see him later today. Im sure he will dismiss that aswell.

But there must be something making my duodenal tube inflamed. I have a helical bacter test tomorrow and a gallbladder scrren on thursday. These are my last tests and after that there is nothing more they can do apparently.

I have not eated gluten for 5 weeks as i have said. If i were to go back onto gluten do u think i will experience may symptoms that may give me a sign that it is celiac disease.

I understand what people have said that i may as well stay off gluten, but it is not making me feel better to i dont see a point. Its really difficult, altough i have the willpower id rather know what is causing the problems rather than thinking it is gluten. I have mentioned candida diet in the past so might go back onto that and see if that helps.

Please can you tell me if im being stupid or if im making sense

[gfgypsyqueen]

Hi Whattodo,

I understand your frustration and hope things work out and you find the source of the problem. In the end, staying on this diet is a choice-even for those of us with a positive diagnosis. Personally, I would never follow this diet if I did not have serious health issues and consequences that brought me here. So I understand, especially about the constant dr appts and the pain too.

Here are a few thoughts.

Do the candida diet along with the gluten-free diet. Start it now. If you know the candida is a problem address it now. I would stay gluten-free while on the candida diet since you already are gluten-free it can't hurt. I bet you wil see improvement on the candida diet. After you see a change and you feel yourself settling down, then challenge the gluten and see what happens.

I would seriously look into a dairy free diet. I mean down to the serious allergen level, not just no milk and cheese. Look it up and avoid everyform of dairy (lactose, whey, casein, ...) It shows up in non-dairy foods, breads, cookies, etc. The reason I say this is my child was not growing and had constant D for a year, we seriously thought it was celiacs, but the biopsy was negative. The doctor said her intestines were chronically inflammed. She never handled milk well, but after that dr agreed we considered her allergic to dairy and removed all traces from her diet. She finally started to grow and stopped the D problems. Maybe later she will develope Celiacs, but for now she just has food allergies.

Ask for some meds to help with the chronic inflamation. If you need to, find a new dr. There is no reason for you to be in daily pain.

Finally, start looking into alternative health practitioners. I love kinesiologists. They do muscle testing to see if the herbs and suplements work for your body and how much you need. I have seen it work wonders for me in the past. Some Chiropracters are kinesiologists and can bill insurance, which helps.

Good luck with your testing this week.

[JennyC]

I'm not sure how long it usually takes adults to feel better, maybe others can chyme in. I would just be sure that you have been on the diet long enough to heal first. If the gluten-free diet is still not helping you then I would try the gluten challenge. If you do the gluten challenge you can always get retested at a later date if you do not find a cause of your symptoms. It may also help to get a second opinion. You know your body, I'm sure that you will make the right decision.

Keep us posted!

[dionnek]

I hear ya - if I didn't have a positive dx (before I had even heard of celiac or knew how to spell/pronounce it!) then I wouldn't be on this diet, but since I had positive blood and biopsy, I stick with it. It took me 6 plus months to notice any difference, and I still have stomach issues (been 1 yr gluten-free) but my intestines were totally damaged and I've heard it can take 2 years to heal that much damage.

Have you been tested for crohns? They thought I might have that, so they tested me for that too. If you think you have candida, I'd try the candida diet and stick gluten-free (since most gluteny foods are off limits on the candida diet anyway) and see if you notice any difference. Then, when/if you get better, try adding some gluten back in - if you don't have any ill effects (not just after one gluten eating - that won't tell you much), then maybe yoiur dr. is right and you don't have celiac. Good luck - I know the diet is hard, especially if you don't have a dx

[holdthegluten]

Well as many of you know i have been having problems with my stomach for a while now. I have had all the tests done that are possible and nothing points to celiac disease.

Out of all the tests the only sign of something not quite right is the fact that my duodenum tube is slightly inflamed.

I have not eaten gluten for about 5 weeks now and nothing has changed. I still have a constant aching in my upper stomach.

The specialist said to me that if i had celiac disease that she would know even if it was in the early stages. i suggested that the inflamed tube should surely be a clear sign of celiac and she said NO. So far i have had a negative biopsy and a negative blood test. The specialist said it could just be that this is the way my stomach works. The pain not necessary is a bad thing, it just doing its thing. I can remember what she called it?

I have also found Dyspepsia on the net and that looks very similar to what i have experienced. I may ask the doctor about this when i see him later today. Im sure he will dismiss that aswell.

But there must be something making my duodenal tube inflamed. I have a helical bacter test tomorrow and a gallbladder scrren on thursday. These are my last tests and after that there is nothing more they can do apparently.

I have not eated gluten for 5 weeks as i have said. If i were to go back onto gluten do u think i will experience may symptoms that may give me a sign that it is celiac disease.

I understand what people have said that i may as well stay off gluten, but it is not making me feel better to i dont see a point. Its really difficult, altough i have the willpower id rather know what is causing the problems rather than thinking it is gluten. I have mentioned candida diet in the past so might go back onto that and see if that helps.

Please can you tell me if im being stupid or if im making sense

I had a borderline positive biopsy and they said i had inflammation in my duodenum. My blood tests actually confirmed the biopsy, which is backwards from the way celiac is normally diagnosed. I didnt feel better for a while after going gluten free (4 months) and i still have off and on issues. 5 weeks is very short to throw in the towel. It takes a while to heal, just read some posts on here about how long it takes for some people. I was considered early stage and i am still not 100%.

[aikiducky]

Although I agree five weeks is often not enough to heal completely, usually people do see at least some little signs of improvement. I actually tend to agree that it might be a good idea to start eating gluten again and see what happens. The inflammation might be from a bacteria (have you been checked for parasites?) or from another food intolerance or allergy that you haven't pin pointed yet, instead of gluten.

Pauliina

[Fiddle-Faddle]

Just wondering--have they ruled out an ulcer? Since they are doing an H Pylori test tomorrow, it sounds like they are only just now starting to suspect it, but did they ever mention it as a possibility? Do you drink a lot of coffee, orange juice, or sodas? Do you eat a lot of potentially irritating foods like tomato sauce or acidic dressings with vinegar? Do you frequently take NSAIDS like ibuprofen or any other medicine that might be irritating to the stomach? (Ibuprofen inflamed my esophagus to the point where they thought I was having a heart attack and chucked me into the hospital for 12 hours of exhausting and expensive tests that all turned out negative because it was the ibuprofen.)

Sorry if you have already ruled all that out.

I don't know which way to vote. I was leaning towards voting for you to give up on the gluten-free diet until I read holdthegluten's post.

[tarnalberry]

Most people won't like my answer, but if all of your tests - the blood work, the biopsy, and the dietary challenge are negative, I'd go back on gluten. BUT! I'd do a strong gluten challenge, since you've got five weeks gluten free behind you already. Eat three bagels the first day. Have whole wheat bread up the wazoo the next. Load up on gluten for at least a week, and see if you notice any difference. This, too, is a test, one that you are uniquely set up to do at this point in time, since you've been gluten-free for a while. If you notice no change after gluten-loading for at least a week, then most likely, it's not your problem.

[CarlaB]

I voted no.

However, that is only because it's been such a short time. I'd give it more time, then do a challenge.

I had my daughter go gluten-free for six months, then she challenged it. Within a few days, she was begging to end the challenge.

[gfgypsyqueen]

Whattodo,

How are you doing? Any of the posts helping you think it through? I have to say that I like tarnalberries strong gluten challenge idea. If you are going to go off the diet, do a strong challenge and take notes before and after the challenge. That might be the best answer for you. Hope you are feeling a little better.

[tom]

I love kinesiologists. They do muscle testing to see if the herbs and suplements work for your body and how much you need. I have seen it work wonders for me in the past.

I know some ppl swear by them.

They must be helping someone or they wouldn't be around at all.

I just wish the technique could pass a double-blind experiment.

If u know of such a study, pls post a link.

Thanks.

[tom]

Most people won't like my answer, but if all of your tests - the blood work, the biopsy, and the dietary challenge are negative, I'd go back on gluten. BUT! I'd do a strong gluten challenge, since you've got five weeks gluten free behind you already. Eat three bagels the first day. Have whole wheat bread up the wazoo the next. Load up on gluten for at least a week, and see if you notice any difference. This, too, is a test, one that you are uniquely set up to do at this point in time, since you've been gluten-free for a while. If you notice no change after gluten-loading for at least a week, then most likely, it's not your problem.

I like this answer very much. W/ hopes of not being seen as obsequious, I'll even call it brilliant.

You ARE in a very unique position.

Ready and willing to go back on gluten around here is Hope Diamond rare.

It could result in the most significant datapoint in your entire health history - regardless of which way it falls.

I say go for it and I hope the results are clear and distinct. (Can't officially vote tho from this phone)

Good Luck!!

[marciab]

What,

I had to try gluten 3 separate times before I was convinced that it was a problem for me. So, I say try it. That way you'll know for sure. And if you respond, then you'll have that negative response to look back on and help you remember why you stopped it in the first place.

I'd start with a small quantity just in case a little is enough to do you in. Or go have that donut you've been missing ...

Also, for your stomach pain, if you haven't already, get some probiotics. I drink Kefir everyday, but there are probiotics in yogurt or you can buy Supplements. These have helped me again and again when my stomach is feeling sluggish.

And make sure you are having daily BMs. This helps too.

Good luck ... Marcia

[tom]

I had to try gluten 3 separate times before I was convinced that it was a problem for me.

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Wondering whether these are connected

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V

I'd start with a small quantity just in case a little is enough to do you in.

[marciab]

Tom,

Nope. Afraid not.

Unfortunately, I'm one of those that doesn't need much gluten to get a reaction.

Marcia