Where To Go From Here?

[jennifer47]

Hi there,

I'm brand new to this, but feel like I need to hear from some people who've been there.

I'm 27 years old and female. Since the start of this year, I've been experiencing diarrhea, constipation, bloating, gas. I've had some abdominal pain. At a blood test in mid-June I had a ferritin of 6 (despite not menstruating for over 2 years...I'm nursing a 20 month old and have not seen a period yet).. I've had hypothyroidism since I was 11.

In the summer, I had an IgG allergy test done and found out I had reactions to tons of foods. In August, I went off all of them (mostly) including gluten, dairy, soy, sunflower, peanuts, lentils, strawberries, and more. I did this under the care of a naturopath, who recommended removing offending foods, but not being too crazy about it. I did my best for 2.5-3 months. I felt a bit discouraged, as I never got to feeling all better. Better, for sure, but I still had bouts of diarrhea. But no pain, and more energy.

My naturopath mentioned at a recent appointment how often people with celiac or gluten sensitivity will test as having lots of food allergies. Also, that low iron levels and thyroid dysfunction can occur. She recommended continuing gluten free.

But, my husband keeps questioning how far gluten free, and I'm starting to feel like that matters. Like do we have to worry about cross contamination, or not? Do I need to worry about "may contains" on labels?

I have a referral to a GI specialist Nov 30, and decided about a week ago to start eating gluten again to ask for a celiac test. But, a week into eating gluten again and I feel awful. Low energy, bad mood, trouble sleeping, stomach always upset.

I'm driving myself crazy wondering how long I need to eat gluten, what to do if I test negative, whether I should just quit and leave it at that! But I also feel this need to know how far to go in protecting myself...do I need to avoid even trace amounts? If anyone out there self-diagnosed, do you insist on gluten free even when visiting, even if it's just a trace amount in a sauce? What about around the house with loved ones?

And should I find out one way or another just to know whether my son or other future children could have celiac? With the strong family linkage, I wonder if it's important to know.

I hope someone is kind and patient enough out there to help me process some of these thoughts and questions! I'm finding it overwhelming! Thanks!

[Skylark]

A couple things. I am self-diagnosed and I am as careful as anyone with a full celiac diagnosis. Gluten makes me sick in many ways and I am fairly certain I am actually celiac. If I get sloppy with my diet and stop worrying about trace amounts of gluten, I find I get tired and run-down. Three days in Mexico eating lightly CC'd food had me sleepy, my stools starting to get oddly soft (I know... TMI), and a canker sore forming. You will get to know your body.

With a reaction and no diagnosis, it isn't safe to be eating things that you know contain gluten, as they have the possibility of causing damage. Wheat-containing sauces at people's houses are out no matter what. Things you might be OK with are gluten-free foods made on "shared machinery" and eating off gluten-free menus at restaurants. It's best to start the diet as strict as is practical for a few months to see how you respond to a careful diet. The start branching out to processed foods and eating out and see how you feel.

To get a positive test, I found one study that put the median time to full relapse with positive blood test and biopsy from eating a moderate amount of gluten at about 12 weeks. I found another challenge study with full gluten and they retested after 8 weeks. The time from a week ago to the 30th may not be long enough.

[anabananakins]

But, my husband keeps questioning how far gluten free, and I'm starting to feel like that matters. Like do we have to worry about cross contamination, or not? Do I need to worry about "may contains" on labels?

I have a referral to a GI specialist Nov 30, and decided about a week ago to start eating gluten again to ask for a celiac test. But, a week into eating gluten again and I feel awful. Low energy, bad mood, trouble sleeping, stomach always upset.

I'm driving myself crazy wondering how long I need to eat gluten, what to do if I test negative, whether I should just quit and leave it at that! But I also feel this need to know how far to go in protecting myself...do I need to avoid even trace amounts? If anyone out there self-diagnosed, do you insist on gluten free even when visiting, even if it's just a trace amount in a sauce? What about around the house with loved ones?

And should I find out one way or another just to know whether my son or other future children could have celiac? With the strong family linkage, I wonder if it's important to know.

I hope someone is kind and patient enough out there to help me process some of these thoughts and questions! I'm finding it overwhelming! Thanks!

Hi. I had the same kinds of symptoms. Felt fantastic after a month inadvertently gluten free (I went entirely grain free). I then spent 3 months eating huges amounts of gluten, feeling half dead the whole time but nonetheless tested negative. A few days after got the 2nd set of negative test results back I went gluten free (the doctor knew and supported this) and I felt amazingly better soon after.

As far as how strict to be... I was encouraged here to make a proper go of it and so I eat 100% gluten free, not just 'gluten lite' to really see the difference. And it was totally worth it. I read labels carefully, I avoid "may contain" type products. I wouldn't touch a sauce that I wasn't sure about. The most careless I've been was while on a trip to the US recently I did use toasters without toaster bags but I was desperate to eat bagels since you can't get gluten free ones here. I couldn't see any crumbs though no doubt they got me anyway. It was hard to tell since I'd already been glutened by something else.

As for how careful you'll need to be... I'd read here how sensitive people were but didn't think it applied to me. After all, I'd been eating heaps of gluten in the lead up to going gluten free and while I felt constantly awful, I wasn't dramatically sick. Ha! Take that poison out of your diet and suddenly any tolerance you'd built up goes. I got glutened for the first time about 3 weeks into being gluten free by contaminated cooking oil and it was brutal. I was also unwilling to go back to the constantly, daily stomach ache I'd thought my whole life was normal. Cross contamination is now a big concern. I'm lucky in that I can keep my house entirely gluten free (I live alone) so I don't have to think about it too much. I eat out much less than I used to but I do have some places where I do fine. I make people who come into my house wash their hands (that's more to keep outside dirt/germs outside but I can avoid them leaving any gluteny finger prints around the place too).

Good luck to you! When I first started all this research I didn't imagine the difference it'd make, nor that I'd never, ever again eat gluten-y products. There's some grief and letting go to face around that, but you'll get through it. It helps reading posts here. There's probably still a lot I haven't faced (haven't eaten at relative's places yet, for example). But it's totally worth it for how good I feel.

[Melstar23]

Hi Jennifer,

I just wanted to say that I'm in a similar situation and I understand how stressful and confusing it is. My doctor told me that I am not celiac, but gluten intolerant because I had a negative celiac panel. I had only been eating gluten for 10 days before the test and I know now that it is not enough, even though my doctor says it is. He told me to stop eating gluten, but I don't have to be as strict to remove it 100%. I am now finding that if I have even a tiny amount of cross contamination is causing me pain. My partner is supportive, but does think that the level of avoidance of gluten is excessive. Also he can be in a bit of a dream land sometimes and does things without thinking, such as I had a bowl of gluten free hommus and gluten free crackers which we were sharing, then he goes and gets some bread and dips it in the dip "Sorry dear, I forgot". I worry that he may be getting gluten crumbs in my gluten free food while I'm not around. I feel like I need to be properly tested for celiac for my own sanity, but I don't know how I can eat gluten for 8 weeks. Also there is the chance that the tests will still come back negative after the gluten challenge.

Good luck, I hope you can find the answers that you are looking for.

[Dixiebell]

The best thing to do if your whole house is not gluten free is to get you some new foods and put a piece of colored tape on those items so your partner, hopefully, will not use them and gluten you. If you do get glutened, make sure you let him know just how sick you are.