28 replies to this topic

[AussieAmanda]

Hello all,

This is my first time posting, I wasn't sure where to post as I am gluten intolerant and don't think I have celiacs as such. I have a few questions so firstly let me share my little journey.

The whole of the last year has been extremely stressful, my psychologist has referred to it as chronic stress and has explained how our bodies manifest physical symptoms when we are in this situation. The most stressful time was last August to November. In August, right when the stress was starting to increase my daughter has bad gastro. I didn't get it as such but I noticed that I started getting bad pains in my abdomen and for the first time I experienced real bloating. After a month of this my Dr said I was 'experiencing IBS' and just said to eat a bland diet. A friend suggested going gluten free so I did. The change was instant, the day I went off gluten I felt better.

I went back to my Dr and told her this after I'd been gluten free about two or three weeks and she did a blood test for Celiacs Disease. I never got the call back so it was negative. I've been since told that I would have needed to go onto gluten again for a few days for the test to be properly done but my Dr never mentioned this.

As time has gone on I've been 'mostly' gluten free. No cakes, biscuits (I'm an Aussie so that would be cookies), pasta or bread that wasn't gluten free. I've still had some sauces which have a wheat base but didn't notice that they effected me a lot.

In January I had a whole week where I was extremely depressed. I felt fatigued, unmotivated, miserable and disconnected. After some time in prayer I was able to mostly snap out of that but still had many of the physical effects of stress.

I started seeing a psychologist this February which is helping a bit.

Finally, I was feeling really rotten, I've had episodes of zig zag vision, heart palpatations (have had both tested) and burning face sensations. Some symptoms last a long time some go away and are replaced with a new one.

I went to my Dr again and she changed my hormone levels as she thought thats what was causing some things and she did a blood test for iron. She told me 'oh your iron count was ok last time we checked at 36'. I've discovered recently that this is actually borderline. My iron results came back lower at 26. She asked me what I thought caused it and I said it had to be being gluten free for six months. The reason I said this is that I haven't been very good with balancing my diet at all. There were days when I skipped lunch because I just didn't know what to have apart from a sandwich or I didn't have the energy to cook up some rice. There were many times that I would eat rice with ketchup on it only and of course I'd eat porridge or gluten free cereal instead of the normal iron based ones. I've read since that low iron is usually a sign that you HAVE celiacs.

I've also gone lactose free recently which has helped even more.

My current symptoms include a tight chest, sometimes headaches, sometimes a lump in the throat sensation, faintness and weakness and gassyness!

I'm wondering if anyone else has been through this sort of thing. Do you think that my celiacs test could have been wrong? I have lost weight since I've gone gluten free, I put this down to my bad diet and also a reduction in baked goods, bread and pasta. There have been times when I've battled my brain as I've been convinced I've had MS, Cancer, Diabeties and silent migranes. My Dr doesn't think so. My inflammatory markers were checked in January and were all fine.

Any advice would be greatly appreciated. Oh and I'm taking St John's Wort, a multivitamin, magnesium, low dose organic iron supplement with vit C and sometimes EPO. Too many pills!!

[etta694]

Hi AusieAmanda,
I, too, have just begun this recovery. It's been since July but I didn't remove all hidden gluten out of my cupboards till around Christmas. What I have noticed is that, after removing gluten, I could notice other food issues. Soy lecithin bothers me, and dairy. Have you gotten rid of old pans, wooden spoons.. you know, things that will cc you? Something people here mention and I have noticed is that you become more sensitive after eliminating gluten. That means if you are getting gluten out of your system, it will be more reactive to smaller amounts. A little bit will cause havoc.
It sounds like you still have gluten and other food contaminants in your life.. (my lastest was cross contaminated mayonnaise)
and welcome to the forum too!

[charliesmom]

My son's only real symptom of celiac was anemia.

Reading through your post though, my main thought was to try removing all gluten - hidden too. Because if you have celiac, those are hurting your villi too and that could be causing your other problems.

Additionally, I would call your dr and ask for a copy of your celiac test to see where you were. Being off gluten for several weeks, your blood test could have come back borderline or normal-ish but it would be interesting to know if you were on the cusp.

[rosetapper23]

You might try removing soy and iodine from your diet--many people with celiac (and you may have celiac) can't tolerate one or the other. Also, it sounds as though you may be deficient in some vitamins and minerals, which could be causing some of your symptoms. Since you worried about MS, symptoms of that disease can be caused by either low B vitamins and/or iron anemia. Also, magnesium is the catalyst for a lot of the body's workings--it's absolutely essential! Please try taking a magnesium supplement that is easy on your stomach (you might have to ask around--I don't know any Ozzie brands). By the way, my daughter lives in Sydney. When I visited her last September, I was stunned at the large array of gluten-free baking goods. My favorite "biscuit" is Butterfingers Shortbread--yummy! Have you ever eaten the gluten-free tea at the QV building? Its scrumptious!

[AussieAmanda]

Thanks for your replies. I think I will have to go exclusive. The amount of gluten I'd eat would be tiny really as its only when I'm out.

rosetapper - I haven't been to Sydney since going gluten free but the QV building is gorgeous! I'll make sure I try it next time I'm there.

Has anyone else experienced iron deficiency once going gluten free?

[mushroom]

Many of us end up anemic, either iron deficiency anemia or pernicious anemia where we are deficient in B12 and/or folate. As soon as I adjusted my B12 (I still get injections) and folate I felt oodles better. I was also deficient in D, magnesium and zinc particularly, but also A and K.

When you go gluten free, it has to be exactly that, gluten FREE. Even tiny amounts, once you start removing gluten from your diet, can set you off. Even cross-contamination from someone handling gluten and then handling your gluten free food can cause a reaction in your body. You have to be absolutely scrupulous, check all your prescription and OTC meds, personal care products (particularly toothpaste, lip gloss), and decontaminate your kitchen. This means new toaster, new colander new plastic and wooden utensils, cuttings boards, etc. Cast iron pans can only be decontaminated by going through a cleaning cycle in a self-clean oven and then reseasoning. Gluten is insidious. It hides in places you would never dream of finding it, in some tomato sauces, in most processed soups, sauces, marinades, many salad dressings - I even found it in Rose's marmalade You have to read every label.

[AussieAmanda]

Thanks Mushroom. I haven't gone to those lengths at all! I have tomato sauce (ketchup) and soy sauce and mayonnaise still mainly. I suppose the main reason I didn't worry about those things as much (I'm very strict on all bread, pasta, cakes, biscuits, pastries, sausages, snacks etc) is because my own doctor told me that I may be able to return to eating gluten again after a little while. Of course reading here I've discovered this isn't true.

The main symptom which is worrying me at the moment is a tight chest and lump in the throat sensation. I've read that this could be GERD or muscle tension. My Dr would be unlikely to test me for those as she puts almost everything down to anxiety. I've dealt well with the anxieties that were the initial cause of my digestive system going out of whack but now the actual symptoms are the cause of the anxieties I have!! Viscous circle really. I have also read that low iron can cause chest soreness. I'm glad to hear that getting low iron from going gluten free happens to others. I'm quite confused about the terminology. She said to me 'you have low iron but you're not anemic' so I'm not sure which term to use. Any direction would be good. Looks like I do need a Vit B supplement then.

[AussieAmanda]

I have been reading up on GERD symptoms which I seem to have (tight chest, lump in the throat sensation). What I've read is that the GERD often disappears after going gluten-free. My symptoms have come since going gluten-free (around 4-5 months in). I was wondering, do you think that my body becoming more sensitive to ANY gluten could cause me to get reflux reactions to it? Its making more and more sense to me that most of the symptoms I've had are related to the IBS induced gluten-free diet. I don't mean in a bad way but simply that I need to go totally exclusive as my body has become more sensitive to gluten. Does this sound right. Here's the list of symptoms I've experienced in the last 6-12 months:

-Heart palpatations (strong enough to have a monitor on for 7 days, finding an abnormality but not life threatening)
- panic/anxiety/depression
- breast soreness
- back issues
- IBS
- Some shooting pains in the legs/Sciatica
- Muscle spasms
- tingling and numbness from pinched nerves/tense muscles
- facial burning/hot and cold sensations on one side that was bad and then decreased to almost totally gone
- Jaw soreness (TMD from jaw clenching) leading to teeth sensitivity
- Vision zig zags, three 2-5 minute episodes over a 6 month period (once sending me to the ER as I was terrified)

I believe I have slight TMD (from jaw clenching from stress), IBS (gone gluten and lactose free), low iron, hormonal fluctuations and maybe GERD.

As I said, all of this is from a period of chronic stress.

Can anyone join the dots so to speak and tell me if things look like they are connected to one thing?

[mushroom]

I can't join all the dots for you, others may be able to, but there are some that stand out. There is a neurological reaction to gluten amongst some people, as well as the gut or instead of the gut reaction. These neuro symptoms include tingling and numbness in the extremities, migraine, panic/anxiety/depression. The vision zig-zags are ophthalmic migraine so also neurological. What you are describing as muscle spasms could be fibromyalgia-type symptoms which are common, as are many other aches and pains. I have (and continue to have if I eat something wrong) the heart palpitations. GERD is a definite correlation.

Take yourself totally gluten free and see how you react is all I can advise. If your symptoms persist after a month then follow up with your doctor. But be forewarned that these things do not go away overnight, especially the neuro symptoms. They take some time to resolve. There are folks here who continue to suffer from fibromyalgia.

[AussieAmanda]

This article from this site sums up everything for me. I have read about adrenal fatigue before and the article ties gluten intolerance, adrenal fatigue, hormonal imbalance, low iron and stress all together. I'm so glad I've found this site!!

Adrenal Dysfunction Article

[gf_soph]

Have you had your B12 and folate tested? Some of your symptoms could link with that, especially the tingling and weird muscle sensations. I would strongly suggest that you get these tested, and get the printouts of your iron and celiac panel. If you're not sure about anything, post the results (and reference ranges) here.

Make sure your doctor is getting a full iron panel, which tests iron, ferratin, saturation and TIBC. Your basic iron level reflects what is circulating in your blood, and your ferratin is a measure of how much you have stored. When you are iron anemic it causes your blood cells to shrink slightly, it may be that your dr is looking at the size of your blood cells to determine if you are anemic. The problem there is that low B12 causes blood cells to enlarge, so if you have both problems at the same time your blood cells can be normal size!

I have had both B12 and iron deficiency, both before and after going gluten free. For me, I ended up having to deal with a lot of other food sensitivities before my digestion improved and my levels finally stabilised.

When anemic I definitely had shortness of breath at times. When I was really low it felt like I could hardly breathe, as my body wasn't getting enough oxygen. I also found that when I ate some foods that disagreed with me it caused my stomach to spasm up, and I unintentionally started breathing shallowly to reduce the pain from that.

I think it would be a great idea to go fully gluten free. I do think that you can become more sensitive over time, and wouldn't it be lovely if you could fix some of these problems by cleaning out all the gluten?

I get very depressed when glutened, it's a totally different mindset than usual and not under my control. It's possible that it is affecting your mood too. I have gluten intolerance too, it really can make you incredibly sick. Don't believe your doctor that you don't have to worry about it because you are not a celiac. There is some early research starting to seriously address gluten intolerance, but most of the medical field aren't well educated about it, and there is a lot still to learn.

When looking into your GERD symptoms, it could just be the gluten, but it's also worth considering if you have been eating more of anything since going gluten free. If you have increased anything in particular, perhaps consider whether it could be linked to the problem. I would highly suggest keeping a detailed food and symptoms diary, it can really help to spot patterns you may not expect.

I can understand it can be really hard to eat a balanced diet at first, but you need to find a way that works for you to eat nutritious meals throughout the day. When I found it really hard to eat at times I would honestly have preferred just not to bother, but I kept coming back to one point - "How can I expect to ever feel better if I'm not giving my body enough basic nutrition?" Your body has taken a beating recently, and if you can't give it the nutrients it needs it can't get better. Don't forget you may not be absorbing your nutrients properly, so you need to be very kind to it.

It's a steep learning curve and can be VERY hard work, but going gluten free, sorting out some easy meals on the go, and getting those levels tested could well have you heading in the right direction.

Good luck

[AussieAmanda]

Thank you so much, I really appreciate what you've said. I know I was tested for my B levels, thyroid, iron etc in January and the Dr said they were all fine. Then they tested for iron again 3 months later and it was down so perhaps the B12 is also down.

I will go exlusively gluten-free now. I was still eating things like stuffing (with breadcrumbs) and some take away chicken that may have had something on the surface of the chook. The other places (as I've discovered) would include from confectionary, sauces and gravies. The only reason I did that was because my own Dr misinformed me that I might be able to return to eating gluten again so I should eat small amounts. Hmmm

Thanks so much for all that input, its so encouraging and helpful!

[charliesmom]

Thank you so much, I really appreciate what you've said. I know I was tested for my B levels, thyroid, iron etc in January and the Dr said they were all fine. Then they tested for iron again 3 months later and it was down so perhaps the B12 is also down.

I will go exlusively gluten-free now. I was still eating things like stuffing (with breadcrumbs) and some take away chicken that may have had something on the surface of the chook. The other places (as I've discovered) would include from confectionary, sauces and gravies. The only reason I did that was because my own Dr misinformed me that I might be able to return to eating gluten again so I should eat small amounts. Hmmm

Thanks so much for all that input, its so encouraging and helpful!

Don't forget to change your soy sauce too

[gf_soph]

It's good that it's been checked, couldn't hurt to have another look. When I was I sure know about poor medical advice, I kept eating gluten for a full year after positive blood tests that I was told were meaningless!

The good news is that for us Aussies, the labelling is clearer than other countries, and our gluten-free standards are stricter. If you can, I would recommend getting the celiac society ingredient booklet, which also explains the labelling system. You can download it as an iphone app if that's an option. If you have access to a few large supermarkets you should be able to find replacement options for pretty much everything, I've also found more and more fruit and veg shops now also stock some gluten-free items.

If there's one near you, crust pizza does gluten free, and is really yummy. There are several gluten-free eating directories online that should be able to give you some ideas.

[AussieAmanda]

The iphone app sounds really good, I'll look into that. I have downloaded some of the free apps but I'm quite happy to pay for one too as its likely to be updated better than a book would. Not sure if I've heard of crust pizzas. Domino's does a gluten free pizza, wonder how careful they are. I didn't realise you are an Aussie too (apart from the avatar!).