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I Guess I Post Here, Now!

Lirren

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Lirren Rookie
Lirren
Posted

I've encountered some of you on the pre-diagnosis board, but I think it's time to tentatively start reading in some other areas.  Based on my biopsy (lymphocytes in s.i. and damage to villi - not severe) and gene tests indicating I'm homozygous DQ2, my doctor is confident that I have celiac, despite a negative blood test. 

 

All of this started after a bout of gastroenteritis, which I gather from my reading can turn someone symptomatic. Prior to my stomach virus, I'd noticed a couple of gut twinges in the previous two months, but other than that I was very healthy: Running 5ks, iron levels sufficient to be a regular blood donor, etc. My digestion had always been sensitive, but not in more than an occasionally inconvenient way. But after the virus passed off, I began to develop increasing abdominal pain. First I was misdiagnosed with diverticulitis, then IBS. Meanwhile, I began to develop anxiety and have panic attacks. When I didn't get better they did a colonoscopy/endoscopy and found the inflammation.

 

It... honestly feels like a rather circumstantial diagnosis on which to base a lifelong diet change. But I guess there are a limited number of other things that case lymphocytes in the small intestine, and blood tests were also negative for Crohn's and IBD.  And there's a lot of circumstantial evidence. A month or so before my gastroenteritis, I came up slightly hypothyroid on a routine physical.  And within days of ceasing to eat gluten, my anxiety and panic attacks stopped...

 

...though I'm now about 2.5 weeks off gluten, and while I think my gut feels better, the abdominal pain is still significant. My gut churns embarrassingly loudly after I eat - and that didn't start until about the time I gave up gluten. I'm really, really hoping all of this calms down soon. I hurt!  In a way, I'm glad of a diagnosis, because it means maybe I can stop feeling bad soon, but I wish it were a little more solid.

 

I guess my one remaining hovering terror is that I'll be refractory - I'm 37, so wasn't diagnosed young. With the DQ2, I have a higher risk of EATL, too, so I'm really anxious for my pains to go away and ease my mind.

 

I know it varies widely, but how long does it take to have abdominal pain and gurgling go away? Anybody have any soothing thoughts?

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NoGlutenCooties Contributor
NoGlutenCooties
Posted

If your underlying issue is gluten, and you are completely 100% gluten-free, it WILL get better!  Probiotics and digestive enzymes can help tremendously with the digestion and gas - the probiotics help restore your natural, good gut bacteria and the digestive enzymes help your body break down your food so that it can more easily be digested.

A word of caution though - make sure you get gluten-free supplements - they love to hide gluten cooties everywhere.

 

As for being refractory, hopefully someone with more information on this will respond.  However, from what I understand that is very rare and happens more often in individuals who have had a lifetime of symptoms and get diagnosed later in life - much later than 37.  I'm 42 and recently diagnosed.  I had no symptoms but was diagnosed with osteopenia at 40.  From what I've read - and my doctor agrees - that I'll be able to rebuild bone and be fine. So there's plenty of realistic hope!

bartfull Rising Star
bartfull
Posted

2 1/2 weeks isn't very long. Most folks see SOME improvement by then, but I don't know of many who see complete resolution of symptoms that early. As a matter of fact, for most of us the withdrawal symptoms last a couple of weeks. Give it more time. :)

1desperateladysaved Proficient
1desperateladysaved
Posted

I got diagnosed at 48 and had at least 30 years of undiagnosed symptoms!  I am here to tell you that it can get better!  I am 20 months gluten free, my body is still transitioning, but I have a clear mind and debloating tummy!  I feel okay to good most of the time.  Take in nutritious food and GET BETTER.

 

D

Lirren Rookie
Lirren
Posted
  • Author

2 1/2 weeks isn't very long. Most folks see SOME improvement by then, but I don't know of many who see complete resolution of symptoms that early. As a matter of fact, for most of us the withdrawal symptoms last a couple of weeks. Give it more time. :)

 

 

Waugh! I hope so. I am so depressed, anxious, and frustrated. A month before the gastroenteritis set me off, I could run five miles. Today I shambled a quarter-mile on the treadmill before I had to stop - not from lack of energy, but because the impact of every step jarred my guts and caused too much pain to bear! (Besides, I typically take that kind of pain as my body's sign that I am Doing Something Wrong.)  I am getting my energy back enough to really want to run - and having sleep problems and jitters with the anxiety, so I'd really like to burn some of that energy off and rest better at night. But so far, my guts aren't cooperating.

 

Come on, healing. Soon please. :(

cyclinglady Grand Master
cyclinglady
Posted

You will be running again soon. Listen to your body and allow it to heal. It took me about six weeks to see any results and then I suffered a back fracture thanks to celiac disease. A few months later and I was back on the trails. Riding a new comfort bike too. Looking forward to riding my road bike soon!

Have patience!

Lirren Rookie
Lirren
Posted
  • Author

You will be running again soon. Listen to your body and allow it to heal. It took me about six weeks to see any results and then I suffered a back fracture thanks to celiac disease. A few months later and I was back on the trails. Riding a new comfort bike too. Looking forward to riding my road bike soon!

Have patience!

Thanks!  I am so sorry for your back fracture but glad to hear you are back in action - congrats on the new bike!

 

Grrr, patience. I'm short on it. :)  I know it's good advice, though.

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cyclinglady Grand Master
cyclinglady
Posted

Patience and eliminate all dairy (even in your supplements/probiotics) until you heal more. Of course stay away from gluten forever!

Lirren Rookie
Lirren
Posted
  • Author

Patience and eliminate all dairy (even in your supplements/probiotics) until you heal more. Of course stay away from gluten forever!

 

Yar, good point on the probiotics. I had come to that conclusion about dairy but wasn't thinking about the probiotic - or else was hoping the dose would not be big enough to matter. Maybe that's why I'm hurting so much today.

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      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
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