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Gluten Intolerance?

zeelily

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zeelily Newbie
zeelily
Posted

I have decided to try a gluten-free diet as of 1 week ago. A few of my friends have recently gone gluten-free for symptoms similar to what I have been experiencing. Sorry to be so graphic and descriptive, but I want to provide as much info as possible to get help. I really appreciate those of you who take the time to read my long description! So here is my story:

About 6 years ago, I started having loose-ish bowel movements which seemed to occur more frequently than normal and were very urgent. I figured that I was just under a lot of stress and knocked coffee out of my diet for a while. Things never really got better, but I ignored everything until recently. I currently drink caffeine.

I had a baby 1 year ago. I am not one to throw-up (didn't even get morning sickness), however, since the baby was born there have been 4 or 5 instances when I have woken up in the middle of the night with terrible diarrhea, dizziness, and sometimes vomiting. I will end up taking imodium which works after about 30 minutes.

Over the last several months, I haven't gone a day where I don't wake up in the morning (and even sometimes in the middle of the night) with a sudden urge to have to use the bathroom (loose bowel movements, not quite diarrhea all the time). There are mornings where I have to use the bathroom up to 5 times before leaving the house (during a 1.5 hour morning routine)! I really feel as though the odor is fouler than it should be and I know this is incredibly disgusting, but I think I can smell what I had eaten the day before. This makes me think that I am not absorbing my food well enough.

I ended up missing work last week because I didn't feel well. My husband suggested that I start a gluten-free diet to see if it helps. Now that I have started gluten-free, I have been doing a lot of research and I think if I am really gluten intolerant or have Celiacs, a lot of questions might be answered.

Here are some other things that have been going on with me over the last few years:

-I had gestational diabetes while I was pregnant. This was a big shocker to myself, my family and the doctors because I don't fit any of the risk factors. I am really active and eat healthy, don't have diabetes in my family, am young (29) and am slightly underweight (not by choice, this has always been my body type).

-I was slightly anemic during my pregnancy. Blood tests came back negative for anemia after delivery. I continue taking my prenatal vitamins every night.

-5 months after having my baby, an old back injury suddenly flared up. I was unable to get rid of the back pain using the methods that previously worked. I still have the back pain and it has been 6 months. PT and yoga don't help like they used to. My orthopedist thinks that my pain will go away after I stop nursing because my hormone levels will resume to normal. My rheumatologist thinks that I am someone with looser than average joints. My OB thinks I should go to a chiropractor. Nobody can really give me an answer or a solution.

-8 months after having my baby, my ankle that I had sprained 3 years previously, randomly swelled up. It was to the point that I was on crutches. My ankle is still swollen 3 months later and there are days when I can't walk on it.

-I have had a lot of blood work done recently due to my joint pains (doctors can't figure out what's going on). White blood cell count came back slightly elevated and my thyroid (TSH?) levels came back a bit low. My docs weren't alarmed by these levels and just told me to get re-tested in a few months.

I'm hoping that all of these things that I have been experiencing are tied together somehow and that by changing my diet, I can find a solution. The diarrhea is one thing, but the joint pain has completely altered my life. I have not been able to work out (not even walk the dog around the block) for 7 months!

Does anyone have any thoughts or suggestions? I really appreciate it! Thanks!!!

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Dixiebell Contributor
Dixiebell
Posted

Welcome to the forum!

I would call your Dr. today and ask for these tests. The longer you are gluten free your tests can show false negative. To make it even better, they can show false negative anyway.

total iga serum

Tissue Transglutamas Iga & Igg

Antigliadin Iga & Igg

Endomysial Antibodies

There is also a deamidated gladin test.I think this is a newer test.

I would also get them to check your vitamin levels. Low vitamin levels can cause you to feel bad too.

Oh, and don't let them label you with IBS. From what I have been reading, IBS does't wake you at night.

Best wishes to you!

kpryan Apprentice
kpryan
Posted

Get tested specifically for Vit D as well... hope you find an answer soon!

Welcome to the forum!

I would call your Dr. today and ask for these tests. The longer you are gluten free your tests can show false negative. To make it even better, they can show false negative anyway.

total iga serum

Tissue Transglutamas Iga & Igg

Antigliadin Iga & Igg

Endomysial Antibodies

There is also a deamidated gladin test.I think this is a newer test.

I would also get them to check your vitamin levels. Low vitamin levels can cause you to feel bad too.

Oh, and don't let them label you with IBS. From what I have been reading, IBS does't wake you at night.

Best wishes to you!

Cypressmyst Explorer
Cypressmyst
Posted

You may want to check out the videos and blogs of Dr. Vikki Petersen. Lots of useful information on how gluten can effect us in insidious ways. :)

I found them to be very valuable in my research and to give my eyes a break from so much reading. :)

Open Original Shared Link

sb2178 Enthusiast
sb2178
Posted

Make sure you are examined for Crohn's and colitis as well. Which is not to say that your symptoms aren't celiac, just that the nighttime issues are pretty common in those diseases. The whole process of elimination...

Some people have found that gluten-free helps with those as well.

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    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Gluten related ??

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      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

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      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
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      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
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