Celiac Treatment: What Should I Expect In The 1st Year?

[sandyg]

Hi Everyone,

I was diagnosed with celiac last month. . . I was seeing a cardiologist for some recurrent chest pressure that I was having. He did a thorough cardiac work-up and ruled out heart disease. However, I do have iron deficiency anemia. So, he referred me to a GI doc. I ended up having an EGD and fully expected to have some kind of ulcer, but no. . . instead they found "total villous atrophy"and "chronic gastritis". Then blood test were done, which also confirmed celiac. I am still in shock since there isn't any known celiac in my family, but the diagnosis makes sense given my history of type I diabetes, thyroid disease, and anemia.

Unfortunately the GI doctor who did my EGD doesn't seem all that interested in my follow-up care. He more or less did my EGD as a favor to my cardiologist. So, I would love to hear from all of you folks as far as what your first year after diagnosis entailed. I have embraced the diet, but it has been a hard adjustment since I don't have any obvious symptoms related to gluten. . . I am more interested in hearing about the timing of antibody testing, done density scans, and if any of you had a follow-up EGD to document healing. I do have an appt with another GI, but I would love to know your experiences prior to meeting anyone else new.

Thanks in advance for your help!

Sandy

[ravenwoodglass]

You should have a base line blood test done for your levels of stuff like iron, ferritin, folate, calcium. Then a retest of these after 6 months will tell you if you are absorbing properly again. Some doctors may suggest a reendo after 6 months to a year to check if your villi are healing, I myself would only do this if I was still having problems but that call is totally yours. If blood tests were postive at diagnosis than a recheck at 6 months and a year can let you know if your still glutening yourself, if your body doesn't tell you. Be sure to check your scripts and OTC drugs for gluten also.

[aikiducky]

What ravenwoodglass said... except I wouldn't have a repeat endoscopy before at least a year into the diet. Adults can take up to two years to heal on a gluten free diet, so an endo in six months might just depress you.

Pauliina

[cruelshoes]

I would also add to what the other posters said that you should have a DEXA scan to check for osteoporosis. This is extremely common in newly diagnosed celiacs, due to the malabsorption. This would give you a baseline now, an then could be checked again in a year to see if you are building bone mass.

Here is what the Open Original Shared Link about repeat testing of antibodies:

New celiacs should receive follow-up testing twice in the first year after their diagnosis. The first appointment should occur three to six months after the diagnosis, and the second should occur after 1 year on the gluten-free diet. After that, a celiac should receive follow-up testing on a yearly basis.

Also, the University of Chicago does not reccommend a repeat endoscopy. I had one a 6 months post gluten-free, and there was improvement, but not as much as I would have hoped. THe doctor said that it was normal, and it can take years to fully recover.

[happygirl]

Check out the book listed in my signature----that will make a world of difference for you!

[sandyg]

Thanks to those who replied, but now I have another question. . . A woman that I work, who also has celiac, is telling me that I will need a colonoscopy as part of the initial work-up. Is she pulling my leg???? I'm only 33 and don't have any GI symptoms. I hope not!

Sandy

[loco-ladi]

I am self diag'd so can't answer that question but I also wanted to mention to also check hand creams and lotions as well as toothpaste anything that has the smallest chance of getting into your digestive tract can harm you.

[gfp]

It is hard if you have no external symptoms to know just how well you are adjusting to the diet.

Many of us started off thinking we were 100% gluten-free then later found the gotchas.

Also although you think you have no symptoms doesn't mean you don't have ... we as humans are very adaptive and we get used to coping and our bodies used to handling toxins. Think of a non smoker smoking 40 cigarettes a day or a non drinker drinking what a regular heavy drinker drinks. Even though these people handle the toxins better and don't feel they have external symptoms if they quit altogether they often suddenly find they have "symptoms" they never believed they had. Many of us have found if we go REALLY strictly gluten-free (prepare all your own food from scratch) that our reactions when we slip are more severe.

Plenty of us here put symptoms down to "getting older" or "everyone has that" etc. and these can be really diverse. I am much more sensitive to traditional "allergies" (IgE) when I have been glutened. I get hay fever etc. , migraines and numerous other niggles. I doubt these will be the same for you but there is a good chance things you have accepted as normal or getting older etc. are in fact partly linked to celiac and that you can use these as metrics.

On being gluten-free vs on being gluten-free -lite .. if you share a kitchen you are undoutedly getting small amounts.... if you eat out in all but a handful of places the same problem. Sometimes these amounts are just enough to give some symptoms and not others... I seem to get neurological symptoms before others for instance.

The easiest shortcut is basically to go the whole hog.(not everyone can do this).. for at least 1-2 months don't eat out, remove all gluten from the kitchen completely, remove any old kitchen appliances (especially toasters) ... hopefully like many others you will find your health improves in ways you never thought possible. Once you are certain you have a handle on it you can start introducing new items one by one, the odd meal out then wait 3-4 days just to be sure... then you add that place to your SAFE list. The same for convenience foods etc. .. one by one ad them back...

Do a search on cross contamination on this board and read up... there are so many gotcha's.. and it takes practice as well.