Trying To Figure Things Out

[Civet]

Hi, I am new here and I've been trying to figure out if wheat allergy or gluten intolerance could be the cause of my stomach problems as well as other symptoms.

I have been having stomach problems off and on for over a year and a half, now. I've always had a "nervous" stomach but after a bought of bad diarrhea which may have been set off by some mild food poisoning I started experiencing bloating, mild constipation, gas, and gas pains, a persistent spasm in my esophagus, as well as occasional reflux. I also noticed I have developed lactose intolerance. I tried going on a Dairy-Free diet twice, the first time I screwed up and so I tried a second trial, neither of which really yielded any results.

I decided to give a gluten-free trial a go, though now I realize I probably wasn't gluten-free long enough to notice significant improvement as I only tried it for two weeks. I also made the mistake of eating poorly right after getting off the diet so I'm not sure how well I can judge the "results" at this point.

I've been under a lot of stress lately related to job instability (I'm a freelance illustrator), and it was recommended to me on another forum that maybe I should try doing a longer term gluten-free trial, for at least a month, when my life has stabilized a bit, since I think I'm having trouble discerning potential reactions to the diet from reactions to stress and anxiety.

Anyway, the first day of the diet I felt fine, but the second through fourth or fifth days I started feeling worse, more gas and bloating as well as some serious brain fog. I have always been prone to anxiety and my anxiety seemed to worsen, as well.

This quieted down toward the end of the trial, though I had some episodes of rather bad anxiety where my stomach really started acting up (I experienced urgency rather than constipation, which sometimes happens when I am anxious). I started feeling a little disenfranchised from the diet after this and ended up just going back to eating gluten-filled foods without being careful to test my reactions properly (I had a chili dog, and the next day a ham and cheese sandwich and some cookies, not the smartest tract, I know), thinking the diet hadn't helped and happy I could go back to eating gluten. But the following evening I started feeling very ill, a lot of gas and bloating and spasms, and really really bad anxiety, as well as a significant drop in my energy level. I ended up going to bed around 7:30pm and sleeping on and off. The next day (which was yesterday) I felt very gassy and bloated, but did not have the severe symptoms I had the previous night.

Other symptoms I experience that may or may not have to do with food sensitivity are: lifelong insomnia, chronic rhinitis, tendinitis in my wrist, anxiety and sometimes mild depression, though I have not been treated for anxiety or depression I've been "treated" for the other problems.

I was given the blood test for celiac and it came up negative. I saw a gastro doc who was thoroughly unhelpful and gave me a tentative diagnosis of IBS, but I never saw him after that as he was quite a jerk and didn't seem to be listening to much of what I told him. I was also screened for endometriosis because for some time I was having my most severe symptoms the week or so before my period, though that seems to have stopped now and while my symptoms are much less severe than they were initially (they were at times incapacitating but now it's more like discomfort that can be a hindrance but it's not something that keeps me in bed for most of the day), they are more persistent. I think some of this is linked to the relief of stressors, as over that time I moved out of my parents' house to live on my own (and a lot of stress was coming from living at home).

So I guess what I am trying to ask, sorry for the ridiculously long post, is does it seem like I should try the gluten-free diet again? And if so, would it be better for me to wait for a more stable time in my life, or should I just jump right back in again? (I only stopped it a few days ago). Or should I try seeing another doctor about all this? I'm having a hard time figuring out if my problems are physical or psychological, so I do worry that I may unintentionally influence the results with what I believe could happen (ie. I think eliminating gluten will help so it does, for example). I also worry that I may confuse physical symptoms for psychosomatic reactions, or vice versa.

[ShayFL]

Were you tested for parasites? That bout of D sounds suspicious with the after affects.

[RiceGuy]

Well, firstly, there is often a withdrawal period when starting out on the gluten-free diet. Combine that with the known fact that neurological symptoms do accompany Celiac, and it starts to resemble what you experienced. I also agree that you may need to be gluten-free for a longer period of time before seeing appreciable results. It took about six months gluten-free before I noticed much of anything.

You'll probably find certain supplements to be most beneficial for many things, including the neurological symptoms. Vitamin B12 and magnesium are an amazing combination for both mind and body. They are known to resolve anxiety, depression, restless leg, fatigue, sleeplessness, mood problems, muscle weakness, and much more. Try to also get calcium and vitamin D along with those (it can help to take them at different times of the day). How much these help depends on how much you need them. There's only so much that has been found to help get past gluten withdrawal. Other nutrients to consider include B-complex, potassium, zinc, and iron. Probiotics and digestive enzymes can help too.

With enough time, I think you'll find the gluten-free diet most rewarding, but it does sound like you'll need to avoid dairy for at least a few months or so, while your body heals. Some find they can handle some dairy after being gluten-free long enough.

HTH

[Myrna]

Freelance Illustrator, no wonder you're stressed out! I'm one too, so I KNOW, and there aren't many days that don't go by without job worries.

I've been having similar gi issues and diagnoses by the doc. I know the stress definitely doesn't help my symptoms. Do you have anything to help relieve stress like yoga or meditating or talking with someone, etc.? I had some anxiety issues and talking with a professional really helped.

Are there other docs you can see for your GI problems? My first GI doc was a jerk, but the second one was better, well, at least he didn't cut me off mid-sentence and was open to running various tests.

I hope the best for you and you feel better soon.

[Civet]

ShayFL-

I don't believe so. I was tested for blood in my stool some time ago and that came up negative, that was a long time ago but I don't think I was ever tested for parasites, my doctor's reasoning was that with parasites you typically get a lot of diarrhea, which is not something I experience other than the incident I mentioned which may have been a possible trigger for my problems as well as when I was advised to take Benefiber and probiotics (had a very bad D reaction to that and got off both quite quickly). Otherwise my issues have been more bloating/gas/constipation related. I also have spasms in my esophageal area.

RiceGuy-

So what do you suggest? Do you think I should see a doctor or just simply try the diet for a longer period sometime in the near future? I decided that for the moment I may as well go back to eating gluten-containing foods, hopefully once my stress calms down a little things will be more clear as far as being able to evaluate symptoms and such. I must admit that I find celiac a pretty scary prospect, though, and the worry that that could be the cause of my problems is a bit stressful as well, especially the thought that I may be hurting my body further just by eating normal foods.

As for these supplements, are these things safe to take in combination like that? And are there side effects? I'm wary because my mother started on a calcium supplement a few months ago on her doctors' advice and became very very constipated as a result.

And to the dairy- I am able to handle small to medium amounts of dairy without problems. I can usually have a slice of cheese or a piece of pizza or two and usually I'm ok or may have some minor upset. If I have ice cream, which I don't do much anymore, I take some lactaid and that seems to help. I use soy milk in my cereal rather than regular and find that resolved issues I had been having having straight milk with my cereals.

Myrna-

Haha, yeah, it's not exactly the most relaxing profession. I've been lucky thus far in that since I've been out on my own I've had a fairly steady job with a single client, but recently I found out, rather unexpectedly, that they may not have enough work for me anymore. They're keeping me on with them for various tasks but haven't been able to really say whether I can continue with them full time or if this will drop to a part time position. In come the financial worries, of course.

So have you received a diagnosis of celiac or are you still trying to figure things out as well?

I try taking walks and just chilling out and watching videos/tv I enjoy to relax, and this can help a bit but it doesn't quite do the job overall, I don't think. I have been seriously considering seeing a professional about my anxiety as it's been compounded with recent job stress lately, but I'm not sure how affordable such an option is, especially if I also choose to go see a doctor about these gastro issues I've been having. I've also suspected for a long while that I could have Asperger's Syndrome but again have avoided seeing a doctor on this because of the hefty cost, though also because I worry that I'll go in and not receive any sort of diagnosis and thus be left with no assistance and a large bill. That's one of my worries with seeing a doctor and getting tests done for possible food allergies or celiac, as well. I guess I'm trying to figure out which route would be the best to explore first at this point, so I don't end up wasting more time and money and stress on unnecessary tests and procedures.

As for other doctors, well that won't be a problem since I've moved since the last time I saw any doctors. I still have to find one in the area, which is part of the reason I've been putting things off, I suppose.

[Myrna]

Yeah, you really can never depend on just one client. It's tough times! The publisher of the book I've been working on all year has gone under major changes and my art director and editor are losing their jobs, so hopefully the book gets published. sigh!

After a lot of testing, I was just diagnosed with IBS and GERDs (I just posted it today), but I do seem to have a wheat issue at the very least.

Do you have insurance? If you don't you can get insurance through the Graphic Artist Guild, but of course it isn't cheap. Everything was covered for me under my husband's insurance. I got a referral for my therapist from my doc. I only had a co-pay and only need to go about 5 times. Just getting talking to a neutral party really helped with the stress.

[RiceGuy]

RiceGuy-

So what do you suggest? Do you think I should see a doctor or just simply try the diet for a longer period sometime in the near future? I decided that for the moment I may as well go back to eating gluten-containing foods, hopefully once my stress calms down a little things will be more clear as far as being able to evaluate symptoms and such. I must admit that I find celiac a pretty scary prospect, though, and the worry that that could be the cause of my problems is a bit stressful as well, especially the thought that I may be hurting my body further just by eating normal foods.

As for these supplements, are these things safe to take in combination like that? And are there side effects? I'm wary because my mother started on a calcium supplement a few months ago on her doctors' advice and became very very constipated as a result.

And to the dairy- I am able to handle small to medium amounts of dairy without problems. I can usually have a slice of cheese or a piece of pizza or two and usually I'm ok or may have some minor upset. If I have ice cream, which I don't do much anymore, I take some lactaid and that seems to help. I use soy milk in my cereal rather than regular and find that resolved issues I had been having having straight milk with my cereals.

Well, if you intend to get any tests done for Celiac, then you'll need to keep eating gluten. That's a decision only you can make. But keep in mind that false negatives are so common, that regardless of test results, you should go gluten-free for awhile anyway, and stick with it long enough to be sure.

Supplements are most certainly safe when taken in normal amounts. Safe in combination too, and there are no side effects. Supplements are nutrients our bodies need - vitamins and minerals, and not the same as herbal remedies. When the digestive system has difficulties breaking down food and deriving the nutrients, supplements can be tremendously helpful, since they are much more readily available for absorption. You'd be surprised how well the supplements I suggested help with stress, among the myriad benefits. And if you do have a deficiency in them, stress is just one of many issues you'll be continuing to deal with until the deficiency is resolved. Your mother got constipated because her doctor gave poor advice. Calcium must be balanced with magnesium to prevent such issues, and vitamin D is usually a good idea along with them.

The fact that you "can handle small to medium amounts" of dairy is revealing, in that your body really doesn't welcome it. So in such amounts it is an irritant instead of an overt problem. What I'm saying is that in the very least it doesn't help. You may or may not be able to continue consuming it without noticing anything obvious, but it can easily prevent appreciable healing. So it might appear as if the gluten-free diet doesn't help enough alone, and that would be true if dairy is getting in the way.

I know the whole thing can be overwhelming at first, especially when there is a stress factor. So again, those supplements will help, and I think you'll find the rest a lot easier to take on. It won't seem like such a big deal - because it's not.

[ShayFL]

Your Mom got constipated because in general most doctors dont know squat about nutrition. Taking 1 isolated nutrient can always cause problems.

Calcium MUST be balanced with magnesium, boron, potassium and vitamin D. And if he prescribed the carbonate form of Calcium that would also explain a lot. Calcium Citrate is much better.

You can pick up a copy of "Prescription for Nutritional Healing" at any bookstore or health food store. It explains ALL of the nutrients in the front and how they interact with each other and how to balance them. She gives a very good guideline on how much to take of each nutrient. Often you can find a Multi-vit-min that covers everything except Calcium and Mag. So you add one of those to your multi.

[Civet]

First, I want to post.. I was looking through my old files to try to find the blood test results I had quite awhile back. It came on a sheet that had a list of different tests, the only box which was checked was "Other" and this is what it says next to it "TTA and H Pylori negative -- no celiac disease."

I know what the H Pylori is as I requested to have that done specifically after my father told me about it. But what exactly is TTA? Does it comprise all of the blood tests that can be given for celiac disease?

I also found another sheet with blood test results which the gastro doc ran, looking for anemia, thyroid problems, and I'm not sure what else. It says the following "You had a complete blood count, complete metabolic panel, infammatory markers, and a thyroid test performed. These examinations were normal."

Myrna-

Yikes, that's really terrible . I hope your book gets published, as well. What type of book is it? I'm hoping to eventually get into the children's book field myself, though I haven't had much luck so far. I've been doing odd different things like some toy design, graphic design, and for some time now I've been with that one client doing assets for casual gaming games. I'm hoping to eventually get some focus back into my career, heh.

I'm by no means an expert but I recall reading somewhere that different foods can be major "irritants" to people with IBS, so even if you don't have celiac disease maybe getting off gluten would be good for your IBS. Of course, if you don't feel confident in the diagnosis you've received you should pursue it further. It can be hard to get doctors to listen sometimes : / .

I do have insurance, though I have a $1,000 deductible on things like testing (blood tests, an endoscopy, ultrasounds, etc fall under this category, unfortunately). So even with the insurance if I have to do extensive testing it could get really pricey. As for the mental health coverage, I'd have to look into it. I either have to pay a copay or have to pay a percentage of the visit, I can't recall which it was. If I wanted to pursue an Asperger's diagnosis however, at least from what I've been told, it's unlikely insurance will cover it.

RiceGuy-

Thanks for all the info. I guess right now I'm trying to decide if it'd be worth it to get tested for celiac again. Is it possible the blood tests could change after a year or so? I don't really want to go the route of the endoscopy unless it seems absolutely necessary, since it seems both invasive and expensive. At the same time, though, I feel like I want to know, if I do indeed have a problem with wheat and/or gluten, if it is a sensitivity or intolerance or if it is actually celiac.

To the dairy comment- do you mean absolutely all dairy, as in dairy ingredients in foods, too, or do you mean just major dairy products like milk, cheese, etc? I did try the dairy free diet (free of all dairy completely) and didn't see any change in my symptoms.

ShayFL-

Ah, I see. Maybe I will look for that book and see if what it suggests helps. Thanks. I'm curious, what is your opinion on my reaction to the gluten-free diet? Does it seem like it could possibly be celiac or do you think not? I know you're not a doctor, I am just looking for opinions of people more knowledgeable than myself at this point.

[RiceGuy]

RiceGuy-

Thanks for all the info. I guess right now I'm trying to decide if it'd be worth it to get tested for celiac again. Is it possible the blood tests could change after a year or so? I don't really want to go the route of the endoscopy unless it seems absolutely necessary, since it seems both invasive and expensive. At the same time, though, I feel like I want to know, if I do indeed have a problem with wheat and/or gluten, if it is a sensitivity or intolerance or if it is actually celiac.

To the dairy comment- do you mean absolutely all dairy, as in dairy ingredients in foods, too, or do you mean just major dairy products like milk, cheese, etc? I did try the dairy free diet (free of all dairy completely) and didn't see any change in my symptoms.

I don't know if you got the better tests, but either way, do not settle for a diagnosis of Celiac or no Celiac. You want the exact numbers for the antibodies and so forth. Many times one will be abnormal, but they disregard it. There are many many posts about this. I can't fault you for not wanting to go through invasive tests. I know I wouldn't, but that another story (I don't care to be tested - I trust what my body says). But if you seek further testing, make sure to get the right tests done. Not having gone that route, I don't know what tests to recommend, but many members do. Just ask and I'm certain you'll get the info.

To avoid dairy, yes it would mean all dairy, even in supplements. You'd need to do that at the same time as going gluten-free. But given the range of possibilities, it is often a good idea to stick with simple, home cooked meals at first, avoiding processed foods, prepackaged items, etc. Plain veggies, fruits, meats and so forth are your best bets. Once you do feel marked improvement, add one food item at a time, giving adequate time for reactions (like a week or more). Eventually you may find one that bothers you. If you only have to avoid gluten, consider yourself fortunate. Many uncover additional sensitivities once gluten is out of the way. Some of these may be temporary, other may not.

[ShayFL]

Actually I am a Dr......just the Phd kind.

A positive response to a gluten-free diet is not diagnostic of Celiac. But it does tell you that you are (at least) gluten intolerant. Either way, the cure is the same....a gluten-free diet.

You need ACTUAL NUMBERS on those tests. Your doctor just saying "normal" is not sufficient. I was told my thyroid was "normal" for nearly 12 years when in fact I was extremely hypothyroid. When I finally found out that the TSH ranges had changed years ago, I took that to my doctor...who said...hmmmm...maybe you are hypothyroid after all....I fired him and found a doctor that treats by symptoms and not labs.

If you can post actual numbers we can help you. Your TSH might be "normal" according to outdated lab values.