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Gluten Intolerance?


zeelily

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zeelily Newbie

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

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

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

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

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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    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
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