Gluten Light

[alesusy]

Sorry for the outburst - it's a NO day. I believe that - as somebody aptly put it to me - I might be "gluten light" rather than "gluten free". I particularly believe it on such days as today (and the last two days before...), when I'm somewaht dizzy, blurry eyed and itchy all over and I wonder whether this is celiac or SOMETHING ELSE.

 

I know it happened before and it will pass. Rationally I know it, but it's so hard. I've been gluten-free all of 5 months, which is not that much, but my antibodies are much diminished and I'm feeling generally so much better.

My gut feel generally better apart from some bad days and my BM are much, much, MUCH improved. But new things are coming out:

 

the dizziness

the itchiness

the worsened, blurry vision

sometimes, very bad pains in my legs (and sometimes I'm all right)

Irregular menstrual cycle

some episodes of colored flashes in my eyes (they come and go, I may not have one for months and then I'll have one for two days in a row, lasting about 15 minutes, very disturbing - I'm going to an ophtalmo next week even if I think he'll tell me it's got nothing to do with Celiac)

 

The array of symptoms sounds very Celiac-like to me from what I've read from people in the Forum (apart from the colored flashes? anybody can comment on that?). All of these things did happen to me before DX, but never all together or so strongly.

 

So - am I gluten light rather than gluten free? I believe it might be the case. On the other hand it might be that my body does not react well to food with istamines right now. Or it might be something else entirely.

 

I've been playing detective and coming up with very little. The sorghum flour I used for my muffins which might not be entirely exempt from CC. Possibly some of my creams etc which does NOT state any ingredients with gluten in it but you never know. Pet food (I have two cats) from Royal Canine which does NOT indicate anything with gluten in the ingredients but MIGHT be suspected. Dinner out with friends even if I cooked my own pasta in a separate pan with a separate stirrer.

 

Oh experienced people in the forum, what do you think? It is humanely possible that my 'new' symptoms have to do with Celiac? And if yes, could anything of what I listed be responsible?

 

I know it will sound like a boring question but please answer, I'm in full anguish mode (which might have something to do with Celiac, again...)

 

alessandra

[shadowicewolf]

You could haved developed an additional intolerence.

[dilettantesteph]

It does seem that a diet that is gluten free for most celiacs is only gluten lite for other celiacs.

Here is a link to mention of a study of celiacs who were reacting to trace gluten contamination: 

https://www.celiac.com/forums/topic/100327-trace-gluten-responsible-for-ongoing-symptoms-study/

 

There are also other possibilities that others will probably suggested.  Many were suggested to me, but in my case a diet removing trace gluten contamination is what worked. 

 

In case of gluten contamination or other food intolerances it helps to keep a food/symptom journal to track which foods are bothering you.  Keep track of the source of the food as well as what it is in case it has something to do with the processing.

 

It can also  be that you just need more time.  I hope you find solutions soon.

[alesusy]

thank you, steph. Very interesting article. I hope it is not my case, of course, but it's worth giving it a try for some weeks!

[Gemini]

Dizziness and itchiness sound more like an allergic reaction to something and, at this time of year, environmental allergies can definitely cause these symptoms.  Your eye problems should be checked out by the ophthamologist because you may have something else going on, either with your eyes or neurologically.  Not all problems are the result of gluten and trace contamination. If you are being careful with your diet, it is not likely the culprit either. If food were that contaminated, no one would heal.

 

If your creams/make-up do not state gluten ingredients, then they probably don't contain any.  You would have to be continually ingesting them to cause an AI reaction, along with your cat food.  It is always a good idea for anyone, including non-Celiacs, to wash their hands after handling pet food or anything else that shouldn't go into the mouth.  If you develop good habits like these, the chance of you cc'ing yourself becomes pretty slim.  You should also be able to eat dinner with non-Celiacs without fear of being cc'd. I know it can drive one batty when you have symptoms that you are trying to figure out, but don't make the mistake of thinking that gluten is causing them all because there are going to be many things that happen that have nothing to do with gluten.  Don't fall prey to the "gluten in everything" crowd.

 

Celiac's can have other problems related to the eye that are Celiac related so keep those appointments and see what the eye guy has to say.  I get dizzy myself from environmental allergies and it has more to do with my ears becoming a little congested....that can make you very dizzy when exposed to the offending allergen.  I still have some of the allergy symptoms I did before diagnosis and sometimes, things do not go away completely.  Good luck and I hope you feel better soon!

[Adalaide]

Just a thought, but depending on how much contact you have with your cat you probably want to contact the food manufacturer since more than half of the dry cat foods they make do have wheat or wheat gluten listed as an ingredient. Since cats eat, then lick themselves, then put themselves on every available surface in the house it is worth the phone call or email even if you don't think it is a likely problem.

 

I also have to agree that it is easy to suspect that gluten is the cause of everything when it very easily and commonly isn't. When it comes to things with visual disturbances I know exactly how scary and frustrating that can be. Don't skimp on appointments and make sure you follow up, trust your instincts and listen to doctors when they give good advice. I always come home and research what they say to make sure it makes sense to me.

[Brandiwine]

This may be far fetched but I know some one who had the same symptoms docs trying to call it MS ( Muliple Sclerosious) turned out being Aspartme poising here's a link of symptoms,

Open Original Shared Link

It's it more foods than we realize, seasonal allergies also give symptoms like this, or maybe an allergy to something else your eat, start a food dairy to help pin down things that bother you maybe you can find a pattern.

Feel better soon!

[eers03]

Alessandra,

 

Before I offer some thoughts, remember that it comes from someone that knows nothing about you, your lifestyle, your body, etc.  Just a few thoughts...

 

The dry skin/itchiness...  I had CRAZY dry skin.  I'm a guy so I don't really pride myself on lotioning up after every single shower but guess what...  Lotion it is. Keep that low though, I don't want word getting out..  Early on, I even had a few patches of skin that felt burnt but was not.  

 

The eyes...  I never had color issues but I had light sensitivity issues, blurred vision issues, and sometimes they just plain hurt.  It took several months but they worked out on their own.

 

The menstrual cycle...  I don't have one but I guarantee your hormones are re-adjusting with your new lifestyle and diet.  I had pain in my breasts of all things and I'm a guy!!!  Thought I was a freak.  Couldn't explain that one...  It was hormones and once they adjusted, it went away after 4-5 months.  Go figure...

 

Make sure you are eating a balanced diet.  If you used to eat pasta, occasionally eat it using gluten-free noodles.  I made an egg sandwich this morning by throwing some Udi's bread in my never glutened toaster.  Make sure you're getting some carbs, some fats, a good multi-vitamin, and some Vitamin D if yours is a little low or if your bone density could stand some improvement...  

 

You'll be fine.  Hope something above proves to be helpful...

 

DM

[cyclinglady]

Sorry for the outburst - it's a NO day. I believe that - as somebody aptly put it to me - I might be "gluten light" rather than "gluten free". I particularly believe it on such days as today (and the last two days before...), when I'm somewaht dizzy, blurry eyed and itchy all over and I wonder whether this is celiac or SOMETHING ELSE.

 

I know it happened before and it will pass. Rationally I know it, but it's so hard. I've been gluten-free all of 5 months, which is not that much, but my antibodies are much diminished and I'm feeling generally so much better.

My gut feel generally better apart from some bad days and my BM are much, much, MUCH improved. But new things are coming out:

 

the dizziness

the itchiness

the worsened, blurry vision

sometimes, very bad pains in my legs (and sometimes I'm all right)

Irregular menstrual cycle

some episodes of colored flashes in my eyes (they come and go, I may not have one for months and then I'll have one for two days in a row, lasting about 15 minutes, very disturbing - I'm going to an ophtalmo next week even if I think he'll tell me it's got nothing to do with Celiac)

 

The array of symptoms sounds very Celiac-like to me from what I've read from people in the Forum (apart from the colored flashes? anybody can comment on that?). All of these things did happen to me before DX, but never all together or so strongly.

 

So - am I gluten light rather than gluten free? I believe it might be the case. On the other hand it might be that my body does not react well to food with istamines right now. Or it might be something else entirely.

 

I've been playing detective and coming up with very little. The sorghum flour I used for my muffins which might not be entirely exempt from CC. Possibly some of my creams etc which does NOT state any ingredients with gluten in it but you never know. Pet food (I have two cats) from Royal Canine which does NOT indicate anything with gluten in the ingredients but MIGHT be suspected. Dinner out with friends even if I cooked my own pasta in a separate pan with a separate stirrer.

 

Oh experienced people in the forum, what do you think? It is humanely possible that my 'new' symptoms have to do with Celiac? And if yes, could anything of what I listed be responsible?

 

I know it will sound like a boring question but please answer, I'm in full anguish mode (which might have something to do with Celiac, again...)

 

alessandra

My mother-in-law had those same symptoms.  She had Multiple Sclerosis.  Since her son (my husband) has a either celiac disease or an intolerance (he's been gluten-free for 12 years), I think that she had celiac disease too.  She had problems with her vision at the very first.  Itchiness?  Do you have a rash?  She never did, but just had the sensation of itchiness.  Please have an M.D. check it out! It's common to have more than one autoimmune disorder.

 

celiac disease and Hashimoto's Thyroiditis

[dilettantesteph]

thank you, steph. Very interesting article. I hope it is not my case, of course, but it's worth giving it a try for some weeks!

 

You are welcome.  I know that the diet that works for me is not the diet that everyone needs.  It is important to let your doctors know what's going on as well.  They will have test results, medical history, and medical training to help you figure out what is going on.  You might want to show them the study.  It is pretty new and not all medical professionals are aware of trace contamination being a problem for some celiacs.  I was lucky enough to have a GI that was.

 

I also get blurred vision, dizziness, muscle pains and visual migraines from gluten.  Your colored flashes might be visual migraines.  You can look into that.  My ophthalmologist had been giving me test after test before I went gluten free.  Afterwards she was mystified about how all the symptoms were gone.  She knew nothing about any connection with celiac disease or gluten.

 

It is pretty easy to try a diet of produce and unprocessed meat for a week or so to see if it makes a difference.  If that is the case for you, it really isn't that bad eating this way, and very well worth the improvement in health.

[Pegleg84]

Alesusy, while it's always possible you're getting CCd from somewhere, I wouldn't call that gluten light. I only apply that to people who go "sorta" gluten free... like cutting out bread but not worrying about stuff in sauces, for example (ie: "gluten-free" dieters). 5 months in, it sounds like you're doing your very best, and you are gluten free to the best of your knowledge. That is NOT gluten light.

 

So, your problems could be cross-contamination (look through everything you usually eat double-check, which I think you're doing), could be your body starting to adjust (a lot of us go through a rough patch a few months in), or you could have another food intolerance (dairy and soy are common suspects. Cutting these out stopped the dizzies and brain fog for me).

 

Definitely see a doctor about the eye stuff. That could be serious. Best to rule it out.

You should maybe also get a full vitamin panel done and make sure your levels are ok. Even though you're starting to absorb nutrience again doesn't neccesarily mean you're getting all the right stuff.

 

 

Anyway, I don't have much advice. Mostly wanted to make a point about the "gluten light" thing.

Hopefully you'll figure it out soon!

[alesusy]

Well, thank you all for the advice. Frankly, I do not think I have got MS and I sure hope I don't...

 

I'm going to see an eye doctor on Monday . But there are days when my eyesight worsen noticeably, and then it gets better. It is hard NOT to think that it is related to something I ate, and to the reaction my gut has to it. The difference in vision from yesterday to today for instance is like I've got one whole point back (on the 20/20 scale). I'm usually about -2 and yesterday it felt like I couldn't read things on my desk. Better today. Go figure.

Same thing with the itchiness. I really have no plans apart from seeing the eye doctor and hanging in there. It's been 5,5 months and I think it's still early. I'm trying to understand whether I have the will to stop ingesting cereals apart from rice... too much fiber is not good for my poor intestines.

 

Pegleg, thanks you for the "gluten light" advice. I did not mean that I am negligent somehow - I am not - but that some CC might still get me, and possibly that I am very sensitive to gluten. Another reason why I may have to try a rice-only diet (I can tolerate rice all right, apparently; a diet of rice and chicken will get back me on track when I feel really whacky).

[Adalaide]

I am always loathe to jump in and say hey, that sounds just like my issue, but if you are quite sure blurry vision, and visual disturbances that could be mistaken for an ocular migraine are linked to what you eat, that sounds just like an issue that began last summer for me. I ended up being diagnosed with something called pseudotumor cerebri, which is not at all scary and is controlled simply by topamax and diet for me. In my case it is just my left eye that has the problem although both eyes can be affected. Basically, it is an intolerance to an amino acid called tyramine that is very high in some foods and causes me to produce excess brain fluid that then puts pressure on my eye and causes the visual disturbances and vision problems as well as headaches. I learned many months later (I'm dense, sue me) that my many other symptoms, including all over itching and debilitating pain are linked to another amino acid intolerance. (Sort of, I'm simplifying.)

 

If you have questions about the first issue with the tyramine and visual problems feel free to message me privately. I've still barely got my toes in this second issue, only enough to make it clear as day it is in fact my problem. Although I can say that the high tyramine foods are high in the second amino acid so clearing up one began clearing up the second for me and could do the same for you. It was trialing new foods that set me off again. Just something I'm throwing at there as an idea in case it is something you want to look up and see if it fits your issue.

[alesusy]

Thank you, Adelaide. It sounds very interesting. However, I do not suffer from headaches. I used to get migraines years ago, awful migraines, but for the last year the only headaches I had were tension headaches related to my aching jaw and my gnashing teeth at night (they reced drastically if I exercise to relax the jaw joints).

 

However, I was already thinking about elimintating some foods beacuse itchiness and other problems related - sort of - to how I feel are also linked to histamines. Tyramine sounds like another nice hiccup:-D . I have no desire to embark upon another round of medical tests, but it DOES feel like an intoxication. This whole celiac experience is better described, for me  on bad days, I mean -- as"a very bad hangover" rather than "flu like symptoms".

[Adalaide]

I thought my headaches were tension headaches. I even got the telltale tension in my neck and shoulder to go with it as proof. I look back now and realize I had this condition a long time before it hit the critical vision problem stage. The test is a fairly simple lumbar puncture which is only necessary if the problem is bad enough to be in danger of permanently endangering your health or if you don't respond to diet and meds. I responded to diet and meds and they didn't need to stab me in the back. (I'm surprised really since the neurologist thinks he needs me to make his boat payment once every 3 months to refill my meds that he didn't want to do an unnecessary medical test and make me pay for it.) The neurologist did mention something about MRIs and CT scans but those had already been done at the hospital. Plus I now have proof I have a brain.

 

We're all different, I was just throwing that out there because the vision thing and the way you described it sounds so familiar. It took the doctors what felt like forever to get their crap together and get on the right page for me. Because of the way I first presented with my vision problems I was actually in the ER and they thought I was having a stroke or some such.

[dilettantesteph]

Before my diagnosis I had 20:40 vision and had used eyeglasses for 30 years.  In addition to that, I had vision problems that the ophthalmologist was monitoring by giving me various tests every 6 months.  There were a few different types, and I remember one being field of view.  I had high pressure in my eyes and she thought I might be developing glaucoma.  After diagnosis and 6 months on a gluten free diet I returned to the eye doctor.  My pressure was normal, my vision was 20:20 and she told me that I didn't need to come back anymore.  I could see a optometrist if I felt that I needed reading glasses.  I had already noticed that I could see better without my eyeglasses and had stopped using them.  I didn't even need them for reading anymore.  The ophthalmologist said that she could not explain why my vision had improved.

 

These days I notice my vision gets blurry as a sign of glutening along with my other symptoms.  I don't have any confirmation of this from eye doctor, but it does seem to be related to ingesting gluten.  It is always a good idea to check out problems with a doctor, but it does at least seem to be a possibility.

[alesusy]

Well, thank you all. Adelaide, I will bear in mind your suggestion - I did go to an eye doctor and a brain scan is a possibility but I've been doing so much stuff and so many exames that I'm really fed up.

 

I have found out, however, that all three pet food I have been using contain either "wheat flour" or generically "cereals". I have two cats. They eat, then they clean up, then they come sleeping on my couch and my bed. Over a period of months I would guess the CC is there. This does not mean that the opitc migraines come from Celiac - they might come from being pre-menopausal. I will see if they keep coming. But other glutening symptoms may well be related to pet food. I will start a new topic... Thanks

 

alessandra, 6 months gluten-free