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Lux

Questions - Please Help!

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Hi all :)

So I've suffered from stomach "problems" since I was 20 years old (now 25). Initially, I had attributed these (bloating/constipation) to an eating disorder that ended up spanning four years. After a ludicrously stressful, and emotionally taxing year, these symptoms went into overdrive - to the point at which I often felt so blocked up I would struggle to breathe. Nausea (which had never before been an issue) became a regular accessory to my usual discomfort.

Although I have visited various doctors throughout the years, I have regularly been met, and disappointed with vague, frequently unsympathetic recommendations to "change your lifestyle", usually accompanied with suspicious eyebrow-raising the moment my eating disorder (from which I am now fully recovered) is mentioned.

Two weeks ago, I finally convinced my GP to give me a blood test, having done the obligatory self-directed research (predominantly based around wonderful sites such as this), and, after yet again enduring the usual eyebrow raising, weight checks and pelvic examinations, I finally had some evidence that my problems were not purely psychological: turns out I am sensitive to both wheat and gluten. (Apparently, my thyroid is also currently underactive, and blood pressure is unusually low - if that means anything).

My GP has put me on a 6 month waiting list for an endoscopy (sp?). I have no way of knowing as to whether or not I will be given a week, or but a days notice for my test. I realize, of course, that in order for damage to be detected to my bowels/intestinal walls, I will need to include "some" gluten in my diet. I must say, that after several days of being gluten free and experiencing the relief I had so badly needed (often crying myself to sleep, the pain was so awful), I have no desire to ingest even the smallest iota of gluten or wheat ever again.

Three days ago, I ate what I thought to be a "safe" box of rice crackers which bear a label claiming to be gluten free. These crackers, however, were NOT wheat free (as I discovered only after having eaten the entire packet, and reading the ingredients listed on the back). Later, I discovered that I had chosen the only flavour made by this particular brand that contained wheat. Well, I ended up swelling up immediately afterward, and the past three days have been unbearable: diarrhoea, followed by the most horribly uncomfortable constipation (this, for me, is unusual: I "go" every morning, but it would appear that I only ever partially empty my bowels, leaving me with a bloated, sluggish feeling for the remainder of the day. Is this common?)

I guess my question is this: is it even worth being tested, if it means putting myself through this kind of agony knowing full well that, if nothing else, I have a gluten/wheat intolerance that is undoubtedly going to cause me discomfort?

My other q is - how long does it take to rid oneself of constipation, and is there any surefire method of hurrying this along? I cannot stand this "blocked" feeling...it's driving me insane :(

Sorry for the fantastically long post. It means a LOT to know there are other people out there who are going through the same thing as me.

xo

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Of course it is ultimately your decision. But if it were me, I don't think it would be worth getting tested. Six months of feeling sick and doing damage to your body just to, what? Tell you what you already know? If you get a positive result, you will just do what your body is telling you to do anyway. If you get a negative result, it could just be that you couldn't bring yourself to eat enough gluten, the right sites weren't sampled, or you just haven't developed the damage yet. Would a negative result cause you to eat the stuff that makes you feel sick?

You have the blood test and your body's response to a gluten-free diet and a gluten challenge. That seems to be enough. I wouldn't go through torment just to satisfy some doctor. Any test or procedure is really up to you.

For the constipation you are experiencing now, it may just take time to resolve. But you can help things along by taking magnesium, a fiber supplement, or senna tea.

Also, a number of people who can't tolerate gluten have problems with casein (a protein in milk) as well. Casein is very binding for some. If you continue to have problems, I would suggest going casein-free and see if that improves things for you.


McDougall diet (low fat vegan) since 6/00

Gluten free since 1/6/07

Soy free and completely casein and egg free since 2/15/07

Yeast free, on and off, since 3/1/07 -- I can't notice any difference one way or the other

Enterolab results -- 2/15/07

Fecal Antigliladin IgA 140 (Normal Range <10 units)

Fecal Antitissue Transglutaminase IgA 50 (Normal Range <10 units)

Quantitative Microscopic Fecal Fat Score 517 (Normal Range <300 units)

Fecal anti-casein (cow's milk) IgA antibody 127 (Normal Range <10 units)

HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 06xx

Serologic equivalent: HLA-DQ 1,1 (subtype 5,6)

Fecal anti-ovalbumin (chicken egg) IgA antibody 11 (Normal range <10 units)

Fecal Anti-Saccharomyces cerevisiae (dietary yeast) IgA 11 (Normal range <10 units)

Fecal Anti-Soy IgA 119 (Normal Range < 10 units)

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You have the blood test and your body's response to a gluten-free diet and a gluten challenge. That seems to be enough. I wouldn't go through torment just to satisfy some doctor. Any test or procedure is really up to you.

Thankyou so much for your reply. I think this is what I wanted - what I needed - to hear, as it seems pretty pointless deliberately harming myself for the sole purpose of confirming something that, in a way, my body has already diagnosed.

I have recently gone dairy free as well, so hopefully that has some results!

Thanks again....

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Hi Lux, I understand how you are feeling with the stomach pain. Before I knew I was intolerant to gluten I would get the worst stomach pains and constipation and no one would understand how I felt, and they just all thought they I was trying not to eat a lot.

I also had that same feeling like I could not breath after eating something with gluten in it. One time after eating dumplings my stomach felt so bloated that I could barely breath and I fainted. I woke up right away. I seriously thought that I was going to die. Have you ever had the feeling after you ate gluten that your heartbeat started to go really fast and getting a really bad headache and cold sweat? Thankfully after going gluten free most of my symptoms are gone. Now I go very regularly. But last week a by accidentally had some soup at the dining halls with noodles in it. After that for about four days I felt a tad bit like I could not go all the way along with severe bloating. After trying my best to go gluten free it seems like my body can't even take small amount of gluten because I don't think I even ate any of the noodles. But now I go more than twice a day (sorry TMI). One thing that really helps me is drinking fruit juice or sesame paste. Hope this helps.

-Tiffy

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Hi Lux,

A blood test is definitely enough for a diagnosis in your case. On top of that, you have also had a positive dietary response. There is no question that you have a problem with wheat and gluten. At this point, an endoscopy/biospy would only be useful in assessing the amount of damage, which may or may not be present. If there were to be no damage present, your doctor would say that you don't have Celiac Disease/Guten Intolerance, which would be wrong. It's not worth spending 6 months destroying your body so that a doctor can confirm or deny a diagnosis for himself. What matters is that the diagnosis has been confirmed for you. You should stay on the diet and give your body the relief it is desperately seeking. Good luck,

-Brian


Celiac Sprue

Multiple Food Allergies

Diagnosed June 2006

Stopped Eating June 2007

IV Nutrition: 6/27/07 - Present

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Thanks, guys - your posts have made me feel so much better!

Tiffy, I know exactly what you mean - the last time I got so "blocked up" I couldn't breathe, I seriously thought I was going to die. I was so terrified I ended up calling HEALTHLINE (a New Zealand number that connects you to medical staff any time of the day or night). The nurse recommended I visit my GP asap. Which I did (hence my recent "diagnosis").

So what I'm wondering now is, how long will it take for my symptoms to subside after having eaten the wheatened crackers? I've been "bloated" (according to others, including my doctor, this is entirely unnoticeable, but it continues to cause me extreme discomfort) for as long as I can remember. I just want it to go away. And it did get better, for several days - up until my wheat encounter, that is.

I have heard that it can take up to 3 weeks for contamination, and its corresponding effects, to subside. But you mentioned four days, Tiffy? I have to admit, I am feeling slightly better today - it's as if the "blockage" has sunk, or moved from my upper abdominal area to lower in my pelvis (if that makes any sense).

Hm. Brian, I am definitely going to take your advice and stay on the diet.

Another q - what are the symptoms for a soy allergy? I have eliminated dairy (extremely difficult for me as I have a serious yoghurt infatuation), but I noticed that various people avoid soy also - meaning that the only option left for cereals/hot drinks etc would be rice milk, no?

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