"i Really Have No Idea What Could Be Causing That."

[Eclara]

    I was gluten-lite for about two years before I went to see my gastro back in October, and I went on a gluten challenge for 8 weeks so she could do an endoscopy/colonoscopy. It was the worst two months of my life. I was in terrible pain and I had a psychotic break and I wanted to die. I somehow stuck it out until the end date, after which I immediately went back to my gluten-lite lifestyle considerably worse for the wear. The results came in the mail six weeks later saying they had taken only four biopsies and they had all come back negative, and surprise! The gnawing pain I developed during the trial was a nasty case of gastritis. They couldn't see me for follow-up for two months.
    So I settled in to wait for my appointment only to discover that I couldn't even eat my gluten-free grains anymore. Everything I ate made me sick and sleepy. I was exhausted and in terrible muscle pain that had started during the trial (and was diagnosed later as fibromyalgia), my anxiety and depression were still in full swing after having been under control for over a year, I had horrible brain fog and stomach aches and I could no longer walk longer than 20 minutes without being bedridden for two days afterward. I was devastated. I started trying to avoid CC as best I could with my brain fog and house full of gluten eaters, got my own cupboards and silverware and tried to be normal again but I just felt worse and worse. I was bedridden all of January with severe muscle pain.
    I started the SCD a few weeks ago, which has helped some with the gastritis and fibro pain, and I no longer get as excessively sick or exhausted after every meal, but I am completely starving and still have lower stomach pain and all of my other symptoms. It has made my anxiety, depression and brain fog even worse. I finally got in to see the gastro again yesterday, hoping she would have something to tell me, but when I described what had been going on she looked baffled and said she had no idea what could be causing my issues because nothing looked wrong on the scopes. I asked her if a gluten intolerance could cause lasting damage like I was experiencing and she sidestepped the question and said "It could even be something else in the wheat bothering you, might not be gluten at all." She told me to keep doing what I was doing (read: starving and losing my mind) and sent me for a pelvic/abdominal CT which came back normal except for a ruptured ovarian cyst.
    I don't really know what to do now, or even what direction to go in. I'm running out of specialists to consult. I keep feeling more and more powerless and miserable as time goes on, and I'm furious that I made my symptoms so much worse with no payoff. Anyone have any suggestions for what to do next, or other ideas for what this could be?
 

[tarnalberry]

do you still have a mixed household?  honestly, that's the first thing I would change.

[Eclara]

do you still have a mixed household?  honestly, that's the first thing I would change.

 

I do, but I live with my parents and my three siblings and there is no way they would change their eating habits for me, even if I got a definite diagnosis. There's also no way I can move out as I have no money and am currently unable to make any.

[Takala]

Stop consulting these idiots who are only interested in insurance reimbursements would be another start.....

 

Going SCD might not be enough right now, you may have to go on some slightly altered version of Paleo (no dairy, or very little of it at all, and no grains, only "seeds" family, or limiting it to brown rice only, and not much of it) until you get yourself back to normal again.  This has been a very short time for you to get over the idiocy of the damage from the gluten challenge. 

 

Are you an oats reactor?  For a small percentage of us, we also react to even gluten free oats, and it's a nuisance as we have to avoid flours that are processed in the same facility with them, or baked commercial goods with the oat flours or contamination.  Ditching this last year made a big difference for me, even though it has changed my baking ingredients drastically because some brands now just won't work for me. 

 

As to the hunger, EAT MORE (good) FAT AND PROTEIN AND VEGETABLES.  Take a gluten free vitamin supplement including the B vitamin complex, and a calcium/mineral supplement with vitamin D and magnesium. Calcium citrate is good.  Make sure everything that goes into your mouth, including OTC and prescription medications, is gluten free.  If you think you cannot bear vegetables, put them in a blender/processor with some fruit and make smoothies, and you can also heat this up to break it down further.  You sound classic for insulin resistance/metabolic syndrome (cystic ovaries another symptom)  and should try eating as if you were very carbohydrate intolerant and borderline type II diabetic controlling it without meds.  This is a two pronged approach, as much as you hate it because of the discomfort, you HAVE to some how exercise with this.  This does not mean going out and running miles a day, just pick something else (other than running, which is bad on the joints) and DO it, alternating days of movement and quieter exercises such as lifting small weights or gentle yoga.

 

Every meal, a form of a good fat, protein, and vegetable.  For example, put coconut milk in pumpkin puree and sweeten with stevia, add nuts (which have been soaked, then toasted and ground up for maximum ease of digestion) and you have a dairy free breakfast entree with all three categories. 

 

You could also try to wrangle a thyroid blood test, but please research what a full thyroid panel is first, write down the names of the tests, and don't let them do it without checking all of it, not just the TSH, or it will be as useless as anything else.  Some thyroid conditions mean you need a thyroid antibody test.  But this still doesn't mean you cannot fix part of  yourself with diet, it is just another thing to look at. 

 

You should also check out the "super sensitives" forum because some of us are really highly reactive to most processed foods and their minute amounts of cross contamination, and the regular people don't quite get some of our whackier reactions to what they can eat without a problem.  

 

Oh, and if you have pets eating gluten, you may want to switch them over to gluten free foods and treats, especially if they are sleeping in your bedroom or licking you or drooling on things.... 

[dilettantesteph]

I am so sorry about what happened to you.  It really illustrates how hard it can be to go back on gluten for testing.  Thank you for sharing that experience.  I would go for a diet of produce and unprocessed meats.   That way there would be little chance for contamination.  Keep a food/symptom journal in case of other food intolerances.  Keep the diet simple so that it is easier to figure things out.  Try to make only one change per week as it can take that long to notice a reaction.   I would keep set up my own little kitchen with a dorm fridge and microwave.  Maybe in your bedroom or a corner of the basement.  I would stay out of the kitchen completely.  Wash your dishes in the bathroom or laundry room sick.  Once you have healed you may be able to tolerate more.  At that point you can start adding things.  I hope that you feel better soon.

[1desperateladysaved]

I am so sorry about what happened to you.  It really illustrates how hard it can be to go back on gluten for testing.  Thank you for sharing that experience.  I would go for a diet of produce and unprocessed meats.   That way there would be little chance for contamination.  Keep a food/symptom journal in case of other food intolerances.  Keep the diet simple so that it is easier to figure things out.  Try to make only one change per week as it can take that long to notice a reaction.   I would keep set up my own little kitchen with a dorm fridge and microwave.  Maybe in your bedroom or a corner of the basement.  I would stay out of the kitchen completely.  Wash your dishes in the bathroom or laundry room sick.  Once you have healed you may be able to tolerate more.  At that point you can start adding things.  I hope that you feel better soon.

I use to wash my dishes in a big stainless steel tub.  You could wash dishes right in your makeshift kitchen that way!  I got the stainless steel tub at Target.  A big stainless steel pot, from a garage sale would work as well.  I am not sure how you would get the money for it, if you truly have none.  An electric skillet can cook meat and veggies.  I really like that idea about a kitchen keletantesteph.  You gave me that idea months back when I needed it.