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lkat

Could This Be Gluten Intolerance/celiac's

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Hi everyone! I'm new to this forum and I apologize in advance for such a long post! :)

I'd love some feedback on my situation (does it sound like it could be Celiac's or gluten intolerance to you?).

Last January I had some minor numbness that started from my feet and moved up my legs over the period of a month or so. It faded away a month or so later. Then a few months later, I developed stronger numbness on my left groin/thigh. This too had started to fade a bit, when the numbness began again from my feet in August and moved up my body to where it was eventually from my chest down. It's always been worse on my left side. I had a fall which made the numbness 10x worse and I was off work for a while until the numbness faded enough that I was able to drive again and get around. When it was really bad, I had bad muscle spasticity and tightness in my legs and torso. Even my three outer fingers on each hand developed numbness.

One thing I've noticed with the numbness is that it feels stronger at night, and doing something strenuous can cause it to feel worse. I'm not sure is this is typical of numbness you may have with gluten intolerance, as I would assume it may only get stronger after you eat something with gluten in it?

I also had a small period probably in July where my left eye felt a bit sore when I looked far to the side, but it went away in about a week, although every now and then I still get a tiny bit of small "light flashing" in the far corner of my vision.

I had an MRI that showed a few small spots in the brain and spine and they said possible MS (I was thinking too it seemed like MS, but could it be something more or in addition to MS?). I am waiting to get into the MS Clinic here which will take about 4 - 6 months.

In the meanwhile, I've noticed that I have been losing a bit of weight in the past month (although I hadn't been cutting back on what I ate, and I admit I have been eating badly and too much) and that for the past month or so my stool is light tan/somewhat orange in colour every day and softer than I think it should be (I have always had bad eating habits for the most part, but this is different from how it used to be).

Since it will take so long to get into the MS Clinic, I was researching online some of my symptoms (to find if there's anything I can do to help my symptoms in the meanwhile ... I just hate to sit back and not do anything) and came across Celiac's and gluten intolerance.

I guess some of my main symptoms are:

#1 - Numbness (the biggest issue, although it is finally fading - still a ways to go to be back to normal)

#2 - Lighter coloured soft stool (can be foul smelling), occasional gas and the odd diarrhea (I would say the latter is more due to eating too large/too fatty of a meal though)

#3 - Weight loss without trying (but only about 8 lbs in the last month or so)

#4 - Fatigue (this has been ongoing for a long while. I feel tired a lot, but it's not debilitating.) and some muscle weakness

#5 - Muscle spasticity and tightness (although this has gone down a lot)

I don't normally have stomach aches, rarely have headaches, etc.

When I researched online, I read that even in Celiac's you can have neurological symptoms before any gastrointestinal symptoms begin. I also read that you can have white-matter lesions with Celiac's as well. I wouldn't have suspected this as a possibility if it wasn't for the weight loss without trying to loose weight and the stool issues. I read that Celiac's can be common to MS, so it's possible I do have MS but also a gluten intolerance? Or could it be that it's been gluten intolerance all along and not MS? I have so many questions and like I mentioned, I can't get into the MS Clinic for many months. I just hate to sit back and wait and not look into ways of making myself more healthy in the meanwhile (i.e. gluten free diet).

I started cutting out gluten from my diet three days ago. The numbness hasn't gone down that I can tell (although something like that may take time I would assume - it does still feel a bit better at times and then a bit worse at others. Usually better earlier in the day and worse at night), but I did notice my stool today was a more normal shade of brown. I think I may feel like I have a BIT more energy, and I feel like my stomach is maybe a "little" flatter (I'm am overweight). I have started to keep a food journal as well along with my symptoms listed so I can determine if there is any pattern.

I'm excited to see how I'll feel as I continue with this diet, but in the meanwhile I was curious if anyone feels this could be gluten intolerance? Has anyone had experience with the numbness which has been my biggest issue? I think even IF it turns out not to be gluten intolerance that I will continue with this diet. It's a lot more healthy than what I had been eating and if it can make me feel better, then I'm all for it!

I'd love to know your thoughts! :)

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I hope ravenwoodglass sees your post and responds to it. She had so many of your symptoms, including UBO's (unidentified bright objects) on the brain and all kinds of neuro symptoms, and was undiagnosed for many, many years. If you believe you might have celiac disease you should be tested now before you go gluten free, or you may well invalidate the testing by stopping the production of gliadin antibodies and giving the villi in your small intestine a chance to heal. You need to be eating gluten (4-6 slices of bread per day or equivalent) for a valid test.

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The pale/yellow stool might indicate a serious problem, but yes, Celiac/gluten intolerance may still be at the heart of it. The symptoms you describe do seem to fit, thought there are certainly other possible causes.

As for the numbness and muscle problems, Celiac patients do indeed often experience such an effect from gluten or other intolerances. Even after being gluten-free for some time, I started having the very sort of thing you describe. It turned out to be both nutrient deficiencies as a result of malabsorption, and nightshade foods (potatoes, tomatoes, etc).

As was stated, if you which to pursue Celiac testing, you'd need to continue eating gluten for the tests to be at their most accurate, which sadly isn't good enough to be relied upon fully anyway. But you can certainly try avoiding all nightshades, and take a few supplements. The B vitamins, (especially B12) are very commonly deficient in Celiac, along with various other things like vitamin D, magnesium, iron, zinc, potassium, and others. The two I found I needed desperately were magnesium and B12. These and avoiding nightshades resolved all the pains and numbness.

Other foods may also be responsible though, and the top allergens is a good place to start. Watch for reactions to things like dairy, soy, corn, nuts, eggs, shellfish and so forth.

BTW, here's some info on yellow stool: http://www.wrongdiagnosis.com/sym/yellow_stool.htm

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Thank you both for your reply.

This is day 5 of gluten free. I "think" my numbness felt a bit less when I woke up these past 2 days (but it fades/comes on stronger at random sometimes it seems, so I think it's early to tell). I did have a bit of an upset in my intestines this afternoon. I'm still keeping a food journal though so hopefully overtime I can see a pattern to what I eat and how I feel. So far I haven't cut out dairy as well, but from my journal I should be able to tell if there is a relation to not feeling well when I eat it.

Question: How long does it normally take for things to move through your body (or I guess I should say how long CAN it take)? For instance, my upset feeling this afternoon ... could it have been caused by something that I ate days ago? Reason I ask is that I saw something in there that I haven't had in many days! Can there be stuff in there that hasn't passed and is only coming out now?

I have been taking supplements for a few months now (when I first heard it could be MS, I started taking what I felt might help that condition). I am taking a good multi-vitamin, extra calcium/magnesium, D3, B12, fish oil and this supplement called Kalawalla that is supposed to help autoimmune conditions. I also have some Black Seed Oil capsules waiting for me to pick up at the post office (which I heard are also good for autoimmune conditions).

I've decided not to go for testing. I figured if I had to go back to eating gluten for a while until the testing could be done, and then have them either tell me it's negative (which may be from what I've read, even if you do have an intolerance) or tell me I have it, and then suggest going gluten free ... well I could go gluten free now and feel better now and not have to wait. I know I've read that even if I do end up having MS, that a gluten free diet seems to be suggested. So I guess it's a win-win situation! :)

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I'm still keeping a food journal though so hopefully overtime I can see a pattern to what I eat and how I feel. So far I haven't cut out dairy as well, but from my journal I should be able to tell if there is a relation to not feeling well when I eat it.

Question: How long does it normally take for things to move through your body (or I guess I should say how long CAN it take)? For instance, my upset feeling this afternoon ... could it have been caused by something that I ate days ago? Reason I ask is that I saw something in there that I haven't had in many days! Can there be stuff in there that hasn't passed and is only coming out now?

From my experience, it can take weeks for an offending food substance to really clear out entirely. I don't mean the passage of food through the intestinal tract, but residual amounts in the body/blood. However, I do know it can takes days for the intestines to get rid of something which is causing a particularly rough time. One might think the intestines are like a tube of ping-pong balls, where they show up at the far end in the same order as they were put in. Experience tells me otherwise.

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It can take days for stuff to pass. Especially problematic stuff. Furthermore, seeing is believing in this case. If it's just coming out now, it took that long to make it out. Also, You've only been gluten free for 5 days. You will still have problems for a bit while the damage heals. If it is Celiac's or gluten intolerance, that is.

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Hello friend! It seems like we're in the same boat. I just posted the other day about how I have a possible MS diagnosis and I was also wondering about the link between MS and celiac.

I have numbness and an MRI finally led to finding a lesion on my spine and 3 on my brain. Like you I'm waiting for a firm MS diagnosis because I don't really have evidence of other MS attacks.

What other tests has your doctor run? I have a huge amount of bloodwork done including vitamin deficency. If you haven't had this done I highly suggest you get all this tested. My understanding is that numbness is a symptom of many many disorders.

My thinking about this whole Celiac/MS thing is that autoimmune diseases have a tendency to run together. I have found a few articles suggesting that anyone with an autoimmune disease should be tested for other autoimmune problems, particularly a food intolerance. It'd be silly to tax the immune system by eating harmful foods when its already dealing with MS! So, for this reason I'm trying to figure out if I have any issues like gluten sensitivity that will further exacerbate MS!

My personal opinion is that you should be talking to your neurologist about your suspicions or worries that the lesions have another cause. MS is also a very real disease and very scary because it doesn't have clear triggers and is full of unknowns. In some ways I'd love to find out my lesions are celiac linked because, to me, I can better cope with avoiding gluten the rest of my life than confronting a disease that I can control even less!

My plan is to go to a local doctor I've heard has experience with celiac patients. I've told my neurologist I'm going to do this and he said to schedule an appointment with the toher doctor and get my blood work sent over so the celiac-experienced doctor can see all the vitamins, diseases, etc that we've already looked at! I'm also working on journaling how I feel while I'm still eating gluten. I'm documenting what I eat every day and how it makes me feel. That way if I do go gluten free as a trial, I'll have a good comparison of how I feel without being as biased (hopefully).

Good luck with all this. I know how frustrating and scary it can be. I'm glad also to know I'm not the only one concerned about connections of autoimmune problems. Seems like there's a lot we need to learn.

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Hi cranberi58,

It's good to know I'm not alone! I did initially have blood work done by my doctor. I don't recall all that she had checked, but I do know she told me my B12, blood sugar, thyroid and other things didn't seem to be an issue (according to her). I also went to a naturopath the end of November who studied my blood samples (dried and fresh). She said she saw deficiency in B12, Iron, Minerals. She thought my glucose seemed a bit high, I had a lack of digestive enzymes and my thyroid seemed out of balance. She also felt I had a build up of yeast in my system. She had suggested I stay away from wheat, dairy, mushrooms and peanut butter (she also gave me a list of other foods to stick with to help cleanse the yeast out of my system - it was so restrictive (to me!) that I haven't actually followed it yet).

I think if I do see improvements on the gluten-free diet that I will see my own doctor again and get her thoughts (I won't get into the MS Clinic for another 4-6 months) and see if she thinks I should be referred to another neurologist. I wasn't too impressed with the original neurologist I had seen. I'm sure he's great at what he does, but he is only available for appointments about once every 3 weeks (he stops in at the hospital) and I find him very "stand off-ish". My last appointment for my MRI results was totally rushed, and he wasn't that great an answering my questions. I asked him if it was normal for the numbness to get worse if you do something physical (for instance, I had carried something heavy up the stairs and instantly it felt like my numbness was worse on my left side), and all he said was "no, that's not normal" and didn't elaborate!

I think it's been about 7 days now of gluten-free (I haven't cut anything else out yet - I wanted to get the hang of cutting out gluten first before I started cutting out more...although I'm not eating much dairy wise anyway, otherwise I think it would be too difficult for me to stick to when I'm starting out), and I still THINK there are some improvements. Mostly in my walking. I have been using a cane, but at work this week I was testing walking without it, and I find I feel more "balanced" and feel like I'm maybe walking a bit more normally. I noticed it on Monday that it seemed a bit better. BUT, Monday night my left side felt a bit more numb again (maybe because I was stressing my body out by not using the cane as much?) and although it's gone down a bit again, it's still not as good as it was before I started work this week. I assume though that if I will see improvements in the numbness that it may go up/down a bit until it hopefully fades away completely. And I have to realize that MAYBE it was going to get better on it's own and the gluten free diet hasn't affected it (since November each week I've seen very small improvements in my numbness).

I think overall I do feel I have a BIT more energy, although other things seem about the same so far (except for the positive change in my walking which is the most exciting to me)!

I look forward to reading more about your journey as well, since it seems we are similar right now with what we are dealing with. :)

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