There Must Be Something Else Going On Here Besides Gluten

[ilikepie]

Hello everyone,

I've been finding all sorts of of good information on this board. I can't tell you how much it's helped me so far. I've been staying away from gluten since November. Three days of going off gluten my horrible acne went away completely. I felt more energized, my regular 15+ mouth sores dissapeared, I lost my bloat and upset stomach, and was just happier in general. Three days after that, I found myself with a horrible rash, which I later found to be from soy. About two days after the soy rash was taken care of, another, but different rash came over me. I had also been suffering from a stabbing pain in my ribs that was non stop. I thought maybe it was dairy related. Dairy turned out to be the culprit of the stabbing pain, among other things, such as serious gas, but the rash didn't budge.

So I have had this rash since November. I went to my doctor and he was completely baffled. He refered me to a dermatologist, but I am on a seriously long waiting list. He and I both agree that we think it is food related, although we have no idea what could be causing it. I'm also having some kind of problem with my stomach. Almost after any time I have eaten, my stomach feels very uncomfortable and like it is under alot of pressure. It sticks out REALLY far, which makes me very self conscious. I also weigh about ten pounds more when my stomach is like this. I don't know if it's related, but I have also been on my period for about six weeks. It's not really heavy, but it is there. I really do not know what is wrong with me, and I am becoming very frustrated with these problems. I am also frustrated in how long it takes me to get a doctor's appointment, and then when I do get to see someone, I am ALWAYS referred to someone else, and in the end, not one of them has any idea what is going on. It's been this way for me my entire life. I have always had odd problems, rashes, eczema (among MANY skin issues), infections, unexplained pains; the doctors always shrug their shoulders.

This past summer I was having weird bumps on my toes. They sort of resembled blisters or calouses. I eventually ended up at a foot doctor, who told me he had never seen anything like what I had in his 30 whatever years of practice. This was after I had been to my primary doctor, and a dermatologist. The foot doctor wanted to do a biopsy to find out what it was, but when the time came just to MAKE the appointment, TWO months later, I was frustrated and didn't want to wait another two months for an appointment. This was before I had ever even HEARD the word "gluten" before, so I didn't think it was a huge deal if my feet looked wierd. Now I am wishing I would have had that biospy. But who knows, maybe it's not related to the problems I'm having now...

Anyways, everyone on this board seems to have alot of good information, and maybe someone has some kind of insight for me. My rash is really what is frustrating me the most, as it is everywhere, including my face. And like I said, I've had it since November.

[frec]

I have two thoughts. Are you sure you aren't still getting glutened from something? It is absolutely infuriating how pervasive it is, and it is hard to keep track of everything when you have just started on the diet. The last time I got sick was from food glaze on some chocolates. I mean, really! Perhaps one of your new regular foods that you are eating on your new diet since November is getting you, either with gluten or some other common allergen. I ate lots of hummus after I went gluten-free, only to discover after a while that I was allergic to the sesame in the hummus as well.

Do you keep a food diary? (major pain, I know) Have you been tested for other food allergies?

[Guest mjhere]

I have two thoughts. Are you sure you aren't still getting glutened from something? It is absolutely infuriating how pervasive it is, and it is hard to keep track of everything when you have just started on the diet. The last time I got sick was from food glaze on some chocolates. I mean, really! Perhaps one of your new regular foods that you are eating on your new diet since November is getting you, either with gluten or some other common allergen. I ate lots of hummus after I went gluten-free, only to discover after a while that I was allergic to the sesame in the hummus as well.

Do you keep a food diary? (major pain, I know) Have you been tested for other food allergies?

[Guest mjhere]

hI, yOU ARE FROM oREGON ALSO...COOL. ImTRYING TO CONVINCE MY DR THAT SOMETHING ELSE IS GOING. I GET THE SORE MOUTH TONGUE YUK....IM GETTING SO TIRED OF TRYING NEW THINGS, BUT THIS SIGHT, REALLY GIVES OUT GOOD INFO. LET ME KNOW HOW YOU ARE DOING, OKAY? MARY

[Guest mjhere]

hI, yOU ARE FROM oREGON ALSO...COOL. ImTRYING TO CONVINCE MY DR THAT SOMETHING ELSE IS GOING. I GET THE SORE MOUTH TONGUE YUK....IM GETTING SO TIRED OF TRYING NEW THINGS, BUT THIS SIGHT, REALLY GIVES OUT GOOD INFO. LET ME KNOW HOW YOU ARE DOING, OKAY? MARY

[ilikepie]

I WAS keeping a food diary, but I found it to be of not much use because it doesn't seem to matter what I eat. I have these problems no matter what. It is possible that I am getting gluten in some way, but not that I am aware of. My Dad is also off gluten and we eat the same things, as we are in the same house right now, and when we get glutened we both feel it. I've been thinking about doing an elimination diet where I eat nothing but meat and fruits and vegetables, and then adding things in later. Right now a main staple in my diet is rice. It seems unlikely that rice could be a problem, but I do really eat alot of it now. I have not been tested for any allergies. So other than soy, dairy, and gluten, I really don't know.

[dbmamaz]

I felt much better when I dropped gluten and dairy, but not all better. I did a ton of testing - i did sensitivity testing with A.L.C.A.T (if you leave out the dots, the name is altered, dont try it!), which tested me for 175 foods and i reacted to 1/3 of them. then i went to an allergist to get tested for foods, and i reacted to all but 6 of the 60 foods he did. I've started on a very limited diet eating only what was a 0 or a 1 on the allergy testing, and negative on the A.L.C.A.T test - but I reacted to rice on the A test, and I reacted to chicken on the allergy test, but I was safe for soy and corn on both tests.

For me, it seemed i had so many allergies, and so many odd ones, i wanted to know exactly what it was before i randomly started eliminating things. I'm feeling much better - although I might have to stop adding new foods for now, becuase its hay fever season already here in VA and I already had an oral allergy response to an orange, which is on my safe list. That makes food challenges so much harder!

[CarlaB]

I don't know if this describes what you have or not .... but check out this thread. Many of us with mystery ailments who don't get 100% better gluten-free end up here.

Open Original Shared Link

[ravenwoodglass]

Have you eliminated gluten from all your toiletries. shampoos, lotions and things like pet food, do you do crafts or home remodeling? All can be sources of mystery glutenings. Also some of us are sensitive to gluten grain alcohols and vinagers, even though they are safe for many. If you use condiments or drink gluten distilled beverages you may want to cut them out for a while and see if things resolve.

[jerseyangel]

I had a 10+ year problem with eczema which went away completely after cutting out legumes. Legumes were also the cause of my horrible reflux--the pain in my chest was so bad that I had cardiac testing. Since stopping all legumes, both problems have not resurfaced (except some reflux when glutened which is not nearly as bad as it was)

It's not unheard of for people with autoimmune diseases to have problems with legumes.

Just a thought

[flourgirl]

Hi there. I haven't a lot of advice to give except to tell you that I've been in the same boat. My rashes did eventaully to away....except for a few eruptions caused by iodized salt and ibuprofen. I was diagnosed finally last Nov., have been on the diet. I had such bad pain under my sternum, stomach, rib cage, it's finally not so bad as it was, but some foods still agrivate that. I find that as I heal (hopefully, I'm healing), I seem to be very sensitive to just about everything. I'm just assuming that soon I'll be able to eat more normally, but right now try to stick to bland food. I have learned to check and re check all foods and supplements and be ever vigilant. The Calcium w/D that I was taking listed starch first......and I don't know what kind of starch that is. Threw them away and am paying more for name-brand Citricale. Keep reading, keep learning, wish you well with your diet and with healing. Good health!

[ilikepie]

Have you eliminated gluten from all your toiletries. shampoos, lotions and things like pet food, do you do crafts or home remodeling? All can be sources of mystery glutenings. Also some of us are sensitive to gluten grain alcohols and vinagers, even though they are safe for many. If you use condiments or drink gluten distilled beverages you may want to cut them out for a while and see if things resolve.

Yes I bought all new lotions and soaps, toothpaste, make up, etc that are all gluten, soy, and dairy free, as hard as it was to find them. I thought about finding a gluten free pet food for my dogs, but would that really affect me if there is gluten in there food? I mean, as long as I'm not touching it when I put it in the bowl. Or do you think just by me petting them after they have eaten it could be a problem?

[ilikepie]

I had a 10+ year problem with eczema which went away completely after cutting out legumes. Legumes were also the cause of my horrible reflux--the pain in my chest was so bad that I had cardiac testing. Since stopping all legumes, both problems have not resurfaced (except some reflux when glutened which is not nearly as bad as it was)

It's not unheard of for people with autoimmune diseases to have problems with legumes.

Just a thought

That is interesting about the ezcema going away after you cut out legumes. I never would have even considered ezcema being food related. But then again, it hasn't been until recently that I am finding that LOTS of problems can be potentially food related. And it only makes sense now that I think about it. Maybe my brain fog was stopping me from coming to that conclusion..

[ilikepie]

I don't know if this describes what you have or not .... but check out this thread. Many of us with mystery ailments who don't get 100% better gluten-free end up here.

Open Original Shared Link

Thanks so much for the link. I have been checking it out and I think it could definately be a possibility for me. I'll have to look into it more, and see how my current elimination diet goes first before I talk to my doctor about that possibility.

[CarlaB]

Thanks so much for the link. I have been checking it out and I think it could definately be a possibility for me. I'll have to look into it more, and see how my current elimination diet goes first before I talk to my doctor about that possibility.

You're welcome. Please read the first couple pages of the thread if you decide to mention it to your doctor. There is a hostile political environment in the medical field regarding this disease .... it's actually harder to get diagnosed with Lyme than with Celiac!

Plus testing is very inaccurate .... at any rate, you will want to be educated on the topic before you mention it.

Good luck in your search to find out what's wrong.

[AliB]

When I first went gluten-free/DF 2 months ago I pretty much cut straight to the chase and eliminated most carbs and sugar as well, as I was still reacting to different things - eggs, soya, even baking powder (the sulphate in the cream of tartar I think as I seem to be ok with baking soda).

Two weeks ago I went even further with the Specific Carbohydrate Diet and went back to basics eating just plain meat, fish, poultry, vegetables, fruits, honey and well cultured home-made yogurt.

Before I went gluten-free I was in such pain with my stomach for hours after every meal I didn't know what to do with myself, not to mention the raging diarrhea. After 5 hours of cutting the gluten and dairy the pain subsided and the diarrhea stopped. Within a week most of the bloating had dissipated and my stomach was feeling much more comfortable, but as I mentioned I was still reacting to quite a lot of things. I would know I had eaten something that disagreed as my stomach would get very uncomfortable and I would get bloating and a dreadful backache.

However, after starting gluten-free/DF and now the SCD I have noticed just 2 days ago that my stomach has settled right down and I am no longer getting the back pain. Yesterday I even had some cheddar cheese for the first time and was ok with it. I also had a fruit salad and was concerned about one or two fruits that I had had a problem with but they were ok too. I also had a few nuts and raisins that no longer affected me so I am so glad I went this route.

I think that dropping so many foods and keeping to basics has really given my gut a chance to start to heal, and also help to start controlling the Candida that I have had around me for years. The only two times in my life I was ever really well was when I went low-carb which is essentially what I am doing now. I still have a way to go, but even just after two weeks I am beginning to see the benefit.

My heart is no longer pounding, my intestines are no longer feeling quivery and nervy and I am also sleeping better. One or two have suggested doing an elimination diet. No it is not particularly easy initially, but it is worth it. In actual fact I have found that after a few days on the diet I no longer had the craving for sweet and stodgy things. That is the problem with carbs - the more you eat, the more you want! I am getting my carbs now in the form of mono-saccharides in vegetables and fruits and the honey and yogurt and am no longer feeding the bad bacteria with all the stodge and sugars that my body cannot process.