New To This...lots Of Questions

[MaineGirl]

Hello All,

I am new to all this and have lots of question, but I'm very frustrated because I just spent about an hour writing a post and for some reason couldn't get past the "post preview" screen. So, I am going to make this one brief because I'm afraid I won't be able to get it to post.

I am, as yet, undiagnosed but have been trying to go gluten-free for the last several weeks on the recommendation of a geneticist who recently diagnosed me with Ehlers-Danlos Hypermobility Syndrome and who thinks celiac disease is likely because of years of unresolved IBS issues, extreme fatigue, joint pain, etc. I also have fibromyalgia, endometriosis, and a history of cervical dysplasia and have been to countless specialists over the last 5 years, from endocrinology to rheumatology to gastroenterology. I had an endoscopy done several years ago but there was no mention of celiac. I was, however, not fond of that doctor so I didn't really pursue the issue. I have also been tested for a number of autoimmune disorders, but I don't know if celia was one of them. The main reason for my post is this: the first couple of weeks of being gluten-free (though after doing some reading, I wonder if I've really been as gluten-free as I thought) went fine but about a week ago, I started to feel nauseaus - not violently ill, but intermittent nausea that still has not gone away. Now, the nausea is accompanied by severe gas pain and bloating and constipation (eew - sorry), and is, at times, very painful. My guess is that the abrupt change in diet meant a very sudden drop in my fiber intake, as I was eating a lot of whole grains before. My question is, has anyone else experienced this, and if so, how long does it take to adjust to the change? I have started taking a soluble, gluten-free fiber supplement, but I'm concerned that this is not normal.

Also, I'm curious about pursuing diagnosis that does not involve having to eat gluten for several months beforehand. What is involved in this kind of testing?

Any advice or insight on this topic would be hugely appreciated.

All the best,

Sarah

[jknnej]

Hi Sarah,

I went through exactly what you just described my first 7 months gluten-free. I finally had to start taking Nexium and it controls my nausea. I never had reflux before I went gluten free but now I do and it makes me constantly nauseated unless I take Nexium. I'm not sure if your issues are similar to mine, though. I think the change in stomach volume is part of the nausea issue.

also, it sounds like you might be ingesting some gluten from a hidden source, as those sound like gluten symtoms OR you could also be struggling with a secondary intolerance, like dairy or casein or some other allergy you don't yet know about. Apparently once we get rid of a food we're intolerant to, you start noticing other intolerances more. That happened with me and dairy.

I know several others will say this to you and I will, too: don't go gluten free if you want a real diagnosis. You MUST be eating gluten when you take the blood test or do the endoscopy. You might not think it's too important right now to be officially diagnosed, but down the line a bit when you realize how strict you must be on this diet you will ultimately start thinking, "Shouldn't I be SURE I have celiac disease before I inconvenience my life, my family, friends, significant others, etc.?" Cus' once you're gluten-free it's hard to eat out and travel. Definitely possible but it takes a LOT of planning and patience to learn where and what you can eat. Plus you have to think about shampoos, make-up, lotions, licking envelopes, new pots and pans, the whole nine yards! For me it was a MAJOR life change.

Anyway, I hope you feel better soon and ask all the questions you want: we're always here that is what is so great about this board!

Jennifer:)

[MaineGirl]

Wow,

Thanks for such a speedy reply. As to getting a diagnosis, I really don't want to go back to gluten after having made a committment, and particularly given the loopty-loops my stomach has been dealing with the last week. I'm afraid that going back on will make it even worse. Isn't there any other way to get an accurate diagnosis?

I was concerned, too, that there may be other intolerances - I've always wondered if I could be lactose intolerant, but I hate the thought of giving that up too.

Thanks again for your reply,

Sarah

[jknnej]

Hi Sarah,

Unfortunately, the only way to diagnose Celiac Disease is with a blood test and a biopsy. The blood test comes first; if it is positive they recommend the biopsy (it is painless...you are out the entire time). But, you MUST be ingesting gluten in order for the blood test or the scope to come out positive; there's no getting around that.

Yeah, giving up dairy is hard, but if you feel better it is worth it and there are so many substitutes out there that you can get used to. Pretty soon you don't even know the difference!

Anyway, if I were you I'd get the tests done...otherwise you will never know and you will be in for even more strife!

[Nevadan]

Wow,

Thanks for such a speedy reply.  As to getting a diagnosis, I really don't want to go back to gluten after having made a committment, and particularly given the loopty-loops my stomach has been dealing with the last week.  I'm afraid that going back on will make it even worse.  Isn't there any other way to get an accurate diagnosis? 

I was concerned, too, that there may be other intolerances  - I've always wondered if I could be lactose intolerant, but I hate the thought of giving that up too. 

Thanks again for your reply,

Sarah

<{POST_SNAPBACK}>

Sarah,

One testing option is Enterolab ( Open Original Shared Link ). They claim their testing is sensitive enought that even if you have been gluten-free for a few months, they will still be able to get valid results. They also have DNA testing available to complement their antibody testing. They can also test for some of the other common sensitivities (e.g. casein (milk), eggs, soy, etc). I've used their services. I recommend checking out their website for further info. Several others on this forum have been tested by Enterolab so a search here for "Enterolab" will give you more references.

My personal opinion is that the best diagnostic test for gluten sensitivity/celiac disease is your own body's response to the gluten-free diet. All of the normal tests can rule GS/celiac disease in but can't completely rule it out.

Re constipation, I recommend a magnesium supplement. It is likely that you are not absorbing magnesium correctly due to intestinal damage. One of my pre-gluten-free symptoms was C which improved with the gluten-free diet, but I still found it took a magnesium supplement to get back completely to normal. I started with 400mg of (gluten-free) magnesium supplement twice per day and after being gluten-free for a few months I can now reduce that to once a day.

George

[RiceGuy]

My personal opinion is that the best diagnostic test for gluten sensitivity/celiac disease is your own body's response to the gluten-free diet.  All of the normal tests can rule GS/celiac disease in but can't completely rule it out.

I agree. I know I'm doing far better by not eating gluten. I have not had any tests done, and I doubt I will. Not unless the cost is affordable to me, which right now it's not.

One of my pre-gluten-free symptoms was C which improved with the gluten-free diet, but I still found it took a magnesium supplement to get back completely to normal.

I think that might explain why I feel better and things seem to run smoother in my gut when I eat spinach, brussell srouts, broccoli, etc. It seems that part of the chlorophyll molecule is magnesium, so the more green veggies you eat, the more magnesium you'll be ingesting. Of course there's the fiber too. I love lots of veggies, so no problems there.

[jenvan]

Hello and Welcome! After going gluten-free, I ended up getting some new symptoms and had worsening of some of my others. Until someone has been gluten-free for a while, and really experienced some healing in the intestines, ups and downs can be normal. I am 9 mos gluten-free, and still experience ups and downs...you have several other issues in addition to possible Celiac, so most likely, you will need some real time to heal. One of my biggest Celiac issues was C...and it took several months for that to improve. My rec to help with constipation is beans, if you can tolerate them, exercise, water, fruit and psyllium. If you are interested in more info on that, let me know.

A couple of weeks gluten-free is not long at all. And as you mentioned, you may still be consuming gluten. That is often the case with a new diagnosis. Most of us have experienced that-it takes a while to get the hang of it! Have you cked your products yet ? Meaning, makeup, lotions, lip balms, shampoo etc. I advise not using ANY products with with gluten in them. Too risky...