Gluten Free, Still Lots Of Pain

[shopgrlstacy]

Hi, this is my first post! I found out the possibility of having Celiac in October after a biopsy showed some red flags. My doctor was checking because of a horrible pain i was having most days in my stomach ..the very top between my rib cages. anyay, he did the biopsy and that same day told me to start a gluten free diet. About 6 days in i felt so much better .. but every few days would feel sick again (i was likely eating gluten all the time and didnt know).

My blood work came back NEGATIVE so then he sent me for a genetic test. it was positive. I went ahead and "enjoyed the holidays" and really had very little to NO pain??? I started gluten free again the first of the year and have been doing it since, except finding out here and there I had been eating things I didnt know were gluten free (you live, you learn). I have been really careful, but am still sick most days. Still constipation, the burning & pain is back and in full force (which was my worst symptom). i am starting to doubt my diagnosis. however everything else has been negative (gallbladder, medications didnt work, etc etc). my doctor said the gene test and biopsy plus doing farily well on the gluten free is enough for him for now to say yes, it is celiac. I have another appt on the 31st to just discuss how i'm feeling.

Anyone have similar things happen??? Its just werid that I KNOWINGLY ate gluten and felt pretty good ... then the past weeks have really tried 110% to not eat gluten and been sick on and off?? This burning/pain is KILLING ME!

Does anyone else hav these same symptoms??

thanks

[MySuicidalTurtle]

You might have food allergies, ShopGrlStacy, like to corn, soy, or casein.

[mn farm gal]

I was going to also mention, I would bet there is another food allergie going on. You may have to cut out more foods or do the food diary to find out which days you are feeling bad and what you ate. But that is sometime hard because you may have delayed reactions to some foods so it may not be exactly the day you ate it. Good luck!

[GlutenWrangler]

Stacy,

It's definitely possible that you have other food allergies. You could see if you could get tested by a doctor, or use the Sage Elisa food allergy test. But it's definitely a good idea to get tested. Another possibility is that you are consuming hidden gluten or eating cross contaminated food. Mastering every facet of the diet is difficult. Not only do you have to check all labels and maie sure your food is not cross contaminated, but you also have to check all medications, lotions, shampoos, toothpastes, etc. Even some paper plates have gluten in them. I know a few people on this site have newbie kits for people just starting out. Hopefully they will see your post and give you the link. I hope you feel better.

-Brian

[Marlene]

Hi there,

Don't forget that it takes time to heal. I have been gluten/casein free since this past summer and I still have the exact pain as you describe -- it's off and on. And it's worse if I am under a lot of stress. I am seeing an exceptional homeopathic doctor and he said that even though I have eliminated the foods I am intolerant to (gluten and dairy) my body is still chronically ill. This is why I still have the pain and why I react to other foods and even smells. It's not that I'm intolerant/allergic to anything else, my body is just out of whack. This could very well be your problem as well. It's just going to take time. Hang in there.

Marlene

[tummytroubles]

The pain you describe is my worst symptom too. I've found that I'm intolerant to gluten, dairy, sugar, onions, garlic, MSG and pretty much all additives and preservatives, xanthan and guar gums, many spices, and a little bit to corn. I keep uncovering new intolerances like today I had a smoothie with coconut milk in it. I start to cough a lot of flem up (yuck!) right afterward so I know that it is affecting me. If I were to eat in in large amounts and/or over a number of days, I would probably have digestive and other problems. Since I have eliminated so many things, and my body is "hypersensitive" to any potential allergen or intolerance, I can tell pretty much right away when something just isn't right.

It has taken me the last 3 years to figure all of this out, but I still am dealing with the stomach pain below and a little to the right of my ribcage. The pain seems to get worse when I try a lot of new foods, like store bought gluten free foods, etc., but gets better after I start eating basic foods without much seasoning and drink a lot of water to try and "cleanse" myself of whatever I ate that caused problems. The basic foods I eat when trying to get over the pain are cooked brown rice, potatoes, bananas, apples, some fruit juices, various steamed veggies, etc. These things are pretty easy to digest and I just work my way back up to eating more normally (or as normal as gluten free can be) from there.

I hope this helps :-)

[tarnalberry]

I think the three most likely things:

1) you're still getting gluten (if you don't KNOW that it's gluten-free, don't eat it)

1.5) you're getting gluten contamination from cooking/prep/toilettries

2) you need to be more patient and give yourself more time to heal

3) you have additional food intolerances