Do I Have Celiac? Is The Question

[johnsoda2]

Hello I am new to this forum and to gluten free, I have not formerly been diagnosed with Celiac yet and I have been off gluten now for 2 1/2 months give or take the times I inavertadly ate gluten before I realized that their was probably gluten in it. I have battled over my lifetime with GI problems, younger years I was sick all the time, teen years diahrea, (diagnosed with IBS) and depression, which improved after in my early twenties when I went on a vegan diet, and I felt better for the first time in a long time. Then since then I have had 3 children, my diet has fluncuated since from being vegan, to lacto-ovo veg, and eating some fish and now after the birth of my 3rd child gluten,dairy,egg peanut, garlic (sometimes), free, My stomach symptoms started to worsen after the birth of my 2nd child 3 years ago. Bloating was my biggest complaint, some constipation, but lots of flatulance, The bloating would get so back that people would ask if I was pregnant, and I am not a heavy person. When I got pregnant with my 3rd child my symptoms only got worst and my pregancy was difficult, and after baby was born I had extreme fatigue, joint aches, bloating stomach, and just plain felt miserable, I have also always had weak nails and symptoms of vitamin deficiencies, So I went to a naturapath and had testing for food allergy, I believe it was Igg and saliva testing, The results for the blood Igg were Highly allergic for milk, cheese (which I was not surprised because my stomach blows up when I had milk shake after baby #3 was born), seaseme seeds, peanuts, garlic, eggs, gluten was mod allergic with gliadin protien as moderate, my practitioner told me to go on a roatation diet and eliminate dairy because this was supported by my saliva tests( which I never saw those results), and I should be able to eat gluten and bread, I went off dairy,eggs, peanuts, and talked with my mother in law who has many food allegies and she told me I should go off all foods that were in the moderate category also for 6 months, the others for a year, so I did that,

I have been off since Christmas this year and my symptoms have improved, bloating almost gone, unless I eat something I shouldn't, joint pain 90% improvement, energy 60% improvement since I still do not always get a good night sleep with a 7 month old, and no diahrea, . I have talked to a friend who is a gastroenterologist and he would test me but my fear is that the test will not be accurate because I have been off gluten for over 2 months, I heard the villi take up to a year to heal but also degeneration can be patchy at times but if I do the blood test, should I go back on gluten how long, I just do not know what to do, I need to know whether I have celiac so I can move on with my life and open the new chapter of life w/o gluten.

I am unsure if it runs in my family but my family has a history of Gi problems going back to my grandmother and when she died she had horrible osteoporosis which I heard is a latent sign of celiac,

Help me I need advice

[~alex~]

You can try testing but you might get false negative due to being on the gluten-free diet. I had a follow-up biopsy at around 4 months that still showed some damage so it is possible that you could get a positive biopsy. If you really want to be tested do it as soon as possible to increase the likelihood that the damage will show up.

It looks like you're pretty certain that gluten makes you sick. It's a very personal decision but if I were you I wouldn't go back to eating gluten for the purposes of causing enough damage for a positive biopsy. It would probably require a few months of eating gluten and that's too long in my opinion to feel sick when you know you could be feeling much better -- especially having 3 kids, I imagine feeling ill all the time would be very difficult!

There's no easy answers about what to. I guess you just have to decide how important a firm diagnosis is to you. But in my opinion, you already know that gluten is a problem. I would however caution you that if you don't feel 100% better after you've been gluten-free for awhile, pursue further testing. Just in case there is something else going on in addition to gluten caused problems.

[johnsoda2]

Thanks for the advice, I accidently had gluten in some pre-made beans and my stomach felt pretty sick.

[i feel overwhelmed by the whole thing really, I feel lucky that I have in-laws that are gluten sensitive never diagnosed with celiac and they have helped. I probaly will just get the biopsy and have him take multiple sites.

[MDRB]

I was gluten free for about 6 months before I went for diagnosis. My gastroenteroligist put me on a stick diet for one month, I had to eat at least one meal a day that was gluten based. I felt like I was dying after the first week which convinced me that I did infact have celiacs, this was later confirmed with the endoscopy results. It then took me at least another month to get over the effects of the gluten diet.

Doctors will tell you to get a definite diagnosis before putting yourself through the trouble of going 100% gluten free. But I will never get those two months back, losing them really impacted on my life.

My advise is that if you are sure that the gluten affects you, just cut it out. Wheat, Barley, Rye- none of the things you have to cut out on a gluten free diet are particularly nutritionally valuable so you aren't really denying yourself anything except a little convenience.

If you feel better off the gluten, just go for it.