Negative Diagnosis, And I'm Still In Pain

[Sandi*]

I couln't wait to join those posters who were diagnosed by a biopsy and were able to start a new, gluten-free chapter of their lives, knowing the difinite underlying cause of their sickness!

I just got my results back - blood test negative (but low IgA so it could be a false negative, too) and negative biopsy. No visible signs of damage, either.

I wouldn't have a problem sticking to the gluten-free diet if I saw positive results, but I haven't. Ever since I started the diet exactly 2 weeks ago I've been feeling worse in my abdomen area. Cramps, pain, and bloating, much more than when I had been on the gluten challenge for the 7wks prior to the endoscopy. The only positive thing is that my acne got better (it's only been better for the past 5 days or so). But other than that it's really hard for me to stick to a gluten-free diet if I actually feel worse . I have stayed away from legumes or legume-based flours, my flour mix consists of rice, buckwheat, and some corn. It seems that I feel better if I only eat a little bit but that leaves me constantly hungry.

It's just very depressing, I wanted to know for sure something was causing me problems so I could cut it out and be well. This way I'm back to the old "it's IBS" thing. I wanted a diagnosis so bad...I gave the gluten-free diet a proper shot (no cheating of cross-contamination, I've tried gluten-free before so I know how-to), I didn't expect to feel like a million bucks right away but I'm actually feeling worse...makes it hard to stick to any diet.

[ravenwoodglass]

Have you eliminated dairy and soy also? Many of us have other intolerances as well as celiac that come more to the forfront when we go gluten free. You mentioned you were gluten free and then did a challenge. How did you feel when you first went gluten free? Did you see some improvement then? If you have only been back on the diet for a couple of weeks you may not have healed completely yet from the challenge or the stress from the challenge may have 'triggered' another intolerance.

[Sandi*]

Soy - yes, dairy - mostly, like I'd have a bit here and there, and only fermented stuff such as yogurt or cheese, not ice cream. I'd been on a dairy-free diet about 2 years ago but no result.

When I first went gluten-free about 3 years ago I felt better at the beginning but worse towards the end. The whole episode lasted about 4 monts. I felt better initially when my diet was very limited, but later, as I added more foods (and ate more) my symptoms came back. What I added was all home-made, no preservatives, etc. - I was careful about that. After about 4 monts I was back to square 1 so I quit gluten-free.

This time I was gluten-light before the challenge, and on the challenge I actually felt less bad than I expected, except for the acne - that definitely got worse.

[curlyfries]

For me, sugar causes acne to flair up. It also causes intestinal distress. A gluten free diet often has a lot of rice products, which turns quickly to sugar. I can't eat any grains, fruit, or processed foods containing sugar.

I didn't figure this out until I had been gluten free for a while.

I don't know if this could be your problem.....something to think about, anyway.

[ravenwoodglass]

Soy - yes, dairy - mostly, like I'd have a bit here and there, and only fermented stuff such as yogurt or cheese, not ice cream. I'd been on a dairy-free diet about 2 years ago but no result.

When I first went gluten-free about 3 years ago I felt better at the beginning but worse towards the end. The whole episode lasted about 4 monts. I felt better initially when my diet was very limited, but later, as I added more foods (and ate more) my symptoms came back. What I added was all home-made, no preservatives, etc. - I was careful about that. After about 4 monts I was back to square 1 so I quit gluten-free.

This time I was gluten-light before the challenge, and on the challenge I actually felt less bad than I expected, except for the acne - that definitely got worse.

I would go back to the original limited diet that had you feeling better and then slowly, while keeping a food and symptom diary add stuff back in one at a time. That might be helpful.

[tarnalberry]

I would go back to the original limited diet that had you feeling better and then slowly, while keeping a food and symptom diary add stuff back in one at a time. That might be helpful.

This. It appears as though *something* is bothering you. Maybe it's gluten, or dairy, or soy, or some combination, or none of those and something else entirely. You had a period where things were better, so try to replicate that diet, and then keep track of how things affect you as you add them back in slowly.

Keep in mind that stress can also have a huge negative impact on the digestive system. This is not a "it's all in your head" response, but it is a "you may be PHYSIOLOGICALLY too stressed" response. Stress, particularly intense, chronic stress, keeps the sympathetic nervous system activated, which specifically reduces the activity of a number of systems, including the digestive system. Digestion moves slower, is far less efficient, and is inconsistent. That can contribute to heartburn, gas, bloating, constipation or diarrhea, and many other common symptoms. (Not to mention the other systems affected by the sympathetic nervous system never getting a break!) And no, I'm not trying to say that it might all just be stress, but rather to keep in mind the stress levels you are facing now, when you tried the limited diet, and when you're feeling your worst. While it might not be a factor, it might be.

[Sandi*]

Thanks, guys! Yes, something's bothering me, it's just so hard to find out what it is! I'll try going back to the limited diet, I'm just not sure how well that will last since I also remember being very hungry back then. Oh well, I just wish it was easier!

As for stress - actually, it's weird but I feel better GI-wise when stressed because I get the D and get all cleaned out (I'm usually on the C side). Weird, I know...

[beaniebabe]

Just thought I would add something else. Have you considered that corn may be doing some of this to you? I mean the stuff is in like everything. I've had horrible stomach aches from it since I was little until we found out what it was. Just something to consider!

Anywho, also just thought about something that has helped me. I found out about soaking grains overnight and up to a few days to remove the phytic acid and other anit-nutrients. This goes for all grains and was always used by traditional cultures to help them digest grains. Believe me, it's annoying, but it really has helped me a lot. It makes it so much easier on the stomach. I usually wake up and if I decide to have for example, some rice with lentils, I put the rice and lentils in water in a bowl and let it set out for at the very least 8 hours. From what I have read, the minimum amount of time to remove the anti-nutrients is 8 hours. So I just cook it for dinner or something. I believe it is the Weston A. Price foundation that has wonderful articles on this. They also say it should be used to soak nuts and seeds as well as they also contain anti-nutrients. It's like a defense mechanism that these foods have for some reason. Reminds me of how soy can be harmful as well unless it is prepared properly, such as through fermentation. Makes me wonder too if this is part of why there are so many food allergies as things don't get digested well. Hopefully this info helps!

[Sandi*]

Hmm, that's really interesting about pre-soaking, I knew it about legumes but not about other grains. I will definitely have to give it a try. I guess that rules out eating out, huh? I try to eat as healthy/preservative free as possible, but I do eat out for lunch about 3x per week. I try to order as simple meals as possible (aka chicken breast with a plain baked potato, etc.) but I don't think they pre-soak the grains . I've switched to a lot more rice and rice products and have been feeling worse - maybe soaking is the anwer. Will experiment this weekend .

[ravenwoodglass]

Thanks, guys! Yes, something's bothering me, it's just so hard to find out what it is! I'll try going back to the limited diet, I'm just not sure how well that will last since I also remember being very hungry back then. Oh well, I just wish it was easier!

As for stress - actually, it's weird but I feel better GI-wise when stressed because I get the D and get all cleaned out (I'm usually on the C side). Weird, I know...

Sandi, If you can find an allergist who can guide you it might be a little easier. It is not easy to find one who will guide you in the elimination diet process but when you do find one it can help a great deal. It can be done on your own but an allergist can give you a starting point that will give you enough to eat and balanced nutrition. When my PT told me to find one it did take a few phone calls to find one that will do it but in the end the one I found literally saved my life. Do ask before you make an appointment so you don't waste time seeing only allergists who deal with just histamine reactions.

[Sandi*]

ravenwoodglass - yes, I've been to an allergist before but it's exactly as you said - all about histamine reaction, which I think was a good place to start but didn't solve my problem. I'm seeing my GI doc next week to discuss why I'm feeling this bad, so maybe she'll be able to help me with the diet. I may look for a new allergist in the future; however, the truth is, I've been going to doctors a lot lately (gastro and denstist) and we were looking for a new home so I was always taking time off/working around the clock. My boss is extremely understanding so I don't want to abuse the flexibility, plus we're really busy right now. So maybe I'll wait once things settle down a bit after the New Year.

I wish more professionals knew how to work with people's diets, I often feel like I'm more knowledgeable just from self-studying. I guess that's what dietetians are for .