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New Diagnosis, So Overwhelmed

Lilypad517

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Lilypad517 Rookie
Lilypad517
Posted

Hello! I have a short road to diagnosis relatively, compared to some. But it feels like a lifetime. I had emergency surgery for an intussiception in February 2011, with no known cause. After that, I had many many bouts with abdominal swelling, nausea, fullness, constipation, gas, and just terrible awful feeling. These were very similar to what happened the 48 hours before surgery. Some episodes were worse than others. I went to my gp and to the ER several times. Everytime they did a ct scan or blood work, would find nothing, and say I had gas. I was getting worried that after all the time since surgery, I wasn't getting any better.

I had a TERRIBLE episode in July, before my husband and I moved. Actually, mid-move. They ran the usual tests and the doctor said a section of my small intestine was almost to the intussiception stage again, but rest and mess would help, if I would promise to be tested for crohn's disease when we got moved and settled. I went to a Gi doctor in our new town, and it was terrible. He accused me of being a drug seeker because I asked for help, said we'd never find out what it was, and scheduled a blood draw for crohn's, and an upper and lower Gi scope. That same day, my husband suggested trying gluten free diet, because what was there to lose? I called the doctor and asked for celiac disease to be added to my lab tests. I had the blood work, and went gluten free. I felt better within the first week! I was excited for the results from the labs... But when they called with results they hadn't tested for celiac. This was August.

I got frustrated and decided that I would just stick to gluten freedom, but I still had a lingering pain in my side. After the 4th or 5th gluten attack in 3 months, I went to the ER 2 weeks ago and begged them to admit me until they found an answer. They did an upper Gi scope, and TA-DA! Major damage that was characteristic of celiac. They did a biopsy, and diagnosed me with biopsy confirmed celiac. They ran the blood test that requires gluten in the system and I am waiting on results from that. Because I am still getting glutened despite careful diet restriction, the doctor thought it might be positive. A couple medicines I take have gluten in them and we are changing them.

I am relieved to finally have a diagnosis. I am concerned about still getting glutened and the pain in my side. I am seeing a dietician and my doctor for a follow up next Monday.

My biggest question is, how long for healing? I feel better, but not 100%, because the damage in my duodenum is extensive. This was a book, I just needed to share my story and find some support. Thank you for reading if you got this far!

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Lilypad517 Rookie
Lilypad517
Posted
  • Author

Oh and can you get glutened from kissing?? My hubby works on the road, and was home this weekend. He ate a sandwich and I kissed him afterward, and was suck later. I am sure there are other possibilities of cc, but I just thought of this!

Di2011 Enthusiast
Di2011
Posted

Wow, you've had a rough year.

Now you have to get serious about your diet, cc and make sure you check/replace your bathroom/laundry products. Many have wheat but list them under unusual chemical/additive names.

Make sure you read plenty of posts on here - use the "search" at the top right to seek out information.

And kissing someone who's just had a sandwich is not a good idea as it is obviously a problem for you. This gluten-free journey is one you two do together. Needs a little care and attention at first and until you change some of your habits.

The answer to your question: My biggest question is, how long for healing?

is highly dependent on how quickly you get truly gluten-free. Its hard for a while but worth getting diligent for your health.

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      almost a year in recovery - so many questions about to give up

      By knitty kitty · Posted

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    • Rejoicephd
      Struggling to get into a good pattern

      By Rejoicephd · Posted

      Thank you @cristiana.  Its really helpful to hear your experience, thanks for sharing.  8 years is a long time!  And its also good to know that others have experienced worsening before it gets better.  I've just started doing the food diary recently, and I'll keep that going. It's at least helping me try to get a handle on this, and also helps increase my overall awareness of what I'm putting in my body. I will also message my GI doc in the meantime too.  Thanks, it's really helpful to talk through this.  
    • trents
      Help!

      By trents · Posted

      Yes, the development of additional food intolerances is a common spinoff of celiac disease. To ensure valid testing after beginning a "gluten challenge" you would need to be consuming at least 10g of gluten daily (about the amount in 4-6 slices of wheat bread) for at least two weeks. Many cannot follow through with this regimen, however, as their intolerance reactions are just too strong and present too much health risk.
    • junell
      Help!

      By junell · Posted

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    • cristiana
      Struggling to get into a good pattern

      By cristiana · Posted

      I think going back to your GI isn't a bad idea - my visits to the GI did not stop following my diagnosis as I had annoying issues on and off for some time.  Thankfully he is a fantastic GI, with  a great sense of humour, so it wasn't a chore to see him again although I'd rather not have had to, obviously!  But I needed my mind to be put at rest as my symptoms didn't seem to go away overnight as I'd hoped they would.  Initially I recall he recommended I went Dairy Free for three weeks, and he told me it would take that time to see an effect.  At that time, even lactose free milk went straight through me, so it is important, I would say, to even avoid that during a Dairy Free trial. My ongoing symptoms were bloating which did respond a bit to that trial.   However, within about 18 months there was a return to a very sore stomach, plus various aches and pains.   It turned out some gluten was sneaking in with my iron supplement (I was buying Floradix instead of Floravital), but I also think the dishwasher, the oven and eating out were contributors, too. Before my numbers normalised (from memory, about eight years!) I had several follow up appointments and a few more tests, but things gradually did get better.  Having read many accounts on this forum over the years, I don't think it is uncommon for symptoms to get a bit worse before getting better, that was certainly the case with me.  Your gut is damaged so you may well have issues digesting other food in the short term. But do try to be as scrupulously gluten free as you can possibly be as a first step, and I'd definitely try a three week Dairy Free trial.   Your villi because they are damaged are not able to create the lactase required to digest dairy at this time so you may well see some improvement if you come off dairy for a while.  Perhaps keeping a food diary of what you eat, where you eat it, whilst a bit onerous to do, will help identify foods that are causing issues.  For a while, apart from oats, I found peas, lentils and soya products hugely aggravating.  Things should calm down.
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