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Starting Over...

jenni0482

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jenni0482 Newbie
jenni0482
Posted

Hello all..

This is my first post, but I have been lurking for a year and find this the most helpful website on the net for gluten-free living!

I have had Celiac symptoms for over 10 years and like everybody else could not find a doctor that could put 2 and 2 together. In March of last year, a nurse practitioner I was seeing finally had an "AHA" moment and sent me for Celiac blood work.. which of course came back negative. After doing a little of my own research, I learned that there are many false negatives and decided to try going gluten free to see if it helped, and VOILA! 100% difference in my life!!

At the same time they referred me to see a gastroenterologist and it took a year to get an appointment. I saw him last week after one year of being gluten free (I am still having many digestive issues that I need to figure out). Of course, he would like me to get a definitive diagnosis (which I can see the benefits of). But.. the only way to do that (as we all know) is to have a biopsy performed which requires me to go back on gluten for 4-6 weeks... The last few days I have started neglecting ingredients and risking cross-contamination.. but I honestly don't know if I can stick a piece of bread into my mouth knowing what it will do to me...

Has anybody else gone through this? Is there a "best" way to re-introduce gluten into your diet? I am already feeling the effects (heartburn last night, fatigued today, moody, tummy pains...) but really feel the importance of confirming whether it is celiac or just intolerance.. I also need to go dairy and fructose free for awhile (after all this) to see if they make me feel better..

Any suggestions at all would be appreciated.. thanks so much

Jennifer

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ravenwoodglass Mentor
ravenwoodglass
Posted

Gosh I wish the term 'gluten intolerance' didn't exist. It really gives the impression that those with GI are not as seriously ill or don't need to be as strict as someone with celiac.

IMHO they are the same thing! You need to be just as strict and just as much damage can be done.

If you really want to be 'officially' diagnosed I hate to tell you but you really need to be back on gluten for about 3 months to have the best chance. You are already showing symptoms from the little bit you have injested, do you really want to make yourself that sick? It is up to you but be forwarned that even with the 3 month challenge you still risk a false negative with the biopsy.

jenni0482 Newbie
jenni0482
Posted
  • Author

Gosh I wish the term 'gluten intolerance' didn't exist. It really gives the impression that those with GI are not as seriously ill or don't need to be as strict as someone with celiac.

IMHO they are the same thing! You need to be just as strict and just as much damage can be done.

If you really want to be 'officially' diagnosed I hate to tell you but you really need to be back on gluten for about 3 months to have the best chance. You are already showing symptoms from the little bit you have injested, do you really want to make yourself that sick? It is up to you but be forwarned that even with the 3 month challenge you still risk a false negative with the biopsy.

I appreciate your response, but I really do feel a diagnosis is best. I know that it will make me very sick, but I lived with the symptoms for over 10 years.. I'm sure I can handle a few more months to get an answer. My concern isn't that it could be GI or even that it would be less serious if it was, but that it could just be a wheat intolerance or fructose intolerance (which can include wheat) and in those cases I am cutting out a lot more foods than I need to and not getting a full answer to the other foods that are bothering me. Although my fear is that it is a combination of fructose and gluten that are the culprits and then will limit my food choices even more. Living entirely gluten free, as you all know, is a difficult task and I would like to avoid it if possible. I feel as though I have considered this decision carefully and feel it is for the best. I have also learnt that (at least in Canada), having a diagnosis of Celiac can allow you to write off gluten-free foods on your taxes.

What I need to know now, is if there is a way to bring gluten back into my diet slowly? or if it really doesn't matter if I build up to it or not??

ravenwoodglass Mentor
ravenwoodglass
Posted

When I had to do a gluten challenge I was told to eat it at least three times a day. If you are celiac or gluten intolerant even small amounts will cause an antibody reaction. It can take up to a week for the antibodies to build up enough to cause a reaction.

I do fully understand your need for a firm diagnosis. One thing I would do is keep a record of what you are eating and your reactions. I don't know if it is the same there but sometimes with knowledgeable doctors a diagnosis can be given if your reaction to adding it back is extremely bad. Some of us are not able to complete a full three month challenge because it makes us too ill. I was told I only needed to go back on for a week before my biopsy. That was my second challenge within a two month period. I was so ill that I started to bleed as well as having severe D and an increase in all other symptoms before the week was over. I hope you don't get that sick but if you do make sure you let your doctor know immediately.

Stylo Rookie
Stylo
Posted

It's nice to know you can write off gluten free food on your taxes here, I'll mention that to my friend. I personally don't care if I get confirmed positive as I'm planning on going off wheat/gluten based on my own results and I feel

Be careful you don't make yourself too sick though, and best of luck! Keep us updated with how it goes.

jenni0482 Newbie
jenni0482
Posted
  • Author

Thanks guys.. if I get too sick I will just need to forget the whole. I am very sensitive, so really don't know how I will react, but hopefully it will be ok!

I just found out today that my biopsy will not be until August.. I was thinking for now I will just continue ignoring labels and cross-contamination and then a couple months before the date I will introduce it back entirely.. I'm not anxious to go through this, but I just want to know once and for all!!

I will keep you all posted :)

  • 4 months later...
jenni0482 Newbie
jenni0482
Posted
  • Author

Hi Guys!

Well, I made it through my gluten challenge and had my biopsy today. I started eating some gluten again back in April and did it occasionally without symptoms. For the past month, I have been eating it everyday and really pushing it (eating everything I couldn't and missed!). It took 2 weeks of eating it everyday for me to feel any obvious symptoms. The last couple weeks I have been suffering with extreme fatigue, gastrointestinal issues (diarrhea, bloating, hiccups, gagging), and depression/irritability. I had my biopsy today. The preliminary report says:

Mildly nodular mucosa in the second portion duodenum

Mildly atrophic mucosa appearing in the fundus

Anybody know what this means? Hopefully my follow up appointment and biopsy results won't take too long.. the doctor did recommend I go back on the gluten-free diet.

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ravenwoodglass Mentor
ravenwoodglass
Posted

Hi Guys!

Well, I made it through my gluten challenge and had my biopsy today. I started eating some gluten again back in April and did it occasionally without symptoms. For the past month, I have been eating it everyday and really pushing it (eating everything I couldn't and missed!). It took 2 weeks of eating it everyday for me to feel any obvious symptoms. The last couple weeks I have been suffering with extreme fatigue, gastrointestinal issues (diarrhea, bloating, hiccups, gagging), and depression/irritability. I had my biopsy today. The preliminary report says:

Mildly nodular mucosa in the second portion duodenum

Mildly atrophic mucosa appearing in the fundus

Anybody know what this means? Hopefully my follow up appointment and biopsy results won't take too long.. the doctor did recommend I go back on the gluten-free diet.

I hope your following your doctors advice. He appears to have recognized changes that are strongly suggestive of celiac. You don't have to wait until you go back for the biopsy results to get back on the diet.

jenni0482 Newbie
jenni0482
Posted
  • Author

I hope your following your doctors advice. He appears to have recognized changes that are strongly suggestive of celiac. You don't have to wait until you go back for the biopsy results to get back on the diet.

Oh ya! I couldn't wait to go back off gluten and start feeling better again!! You think those comments are suggesting celiac?

ravenwoodglass Mentor
ravenwoodglass
Posted

Oh ya! I couldn't wait to go back off gluten and start feeling better again!! You think those comments are suggesting celiac?

I am not a medical expert but yes I do think the comments are indicative of celiac. It appears your doctor does also.

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