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Please Help Me....i Am Lost!

scottcolleenb

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scottcolleenb Newbie
scottcolleenb
Posted

:( I am 31 years old and was diagnosed with Celiac disease in 2004. I have been on a pretty strict gluten free diet. Every once in a while I will find something that will have gluten in it. Since Aug 2008 I have been having chronic diarrhea, bloating, abd pain that goes on and off, tired, fatigue and have nausea from time to time. I had 2 colonoscopies and they both came back fine. NO doctors had done blood test to check anything else out. I finally found a doctor that ran blood tests. Everything came back normal but my lipase levels and alkaline phosphatase were alarmed low. What is wrong with me? I am lost and need to find out what is going on...Help me!! :huh:

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ravenwoodglass Mentor
ravenwoodglass
Posted

Have they rerun your celiac panels or done a repeat endoscopy to check if you are healing?

It is also not uncommon for us to have other intolerances. Have you tried eliminating the most likely ones - dairy, soy and eggs?

How much processed foods do you eat? Or foods processed in the same facility as wheat products? How gluten free is your home? If it is mixed you need your own toaster, condiments etc.

scottcolleenb Newbie
scottcolleenb
Posted
  • Author
Have they rerun your celiac panels or done a repeat endoscopy to check if you are healing?

It is also not uncommon for us to have other intolerances. Have you tried eliminating the most likely ones - dairy, soy and eggs?

How much processed foods do you eat? Or foods processed in the same facility as wheat products? How gluten free is your home? If it is mixed you need your own toaster, condiments etc.

scottcolleenb Newbie
scottcolleenb
Posted
  • Author

I had my celiac panel ran and it came back normal per the doc. My middle daughter has celiac disease and I have tried to be very careful. could I have something going on with my pancreas? I need to know what other tests should I be asking my doctor to run. Any Ideas?

ravenwoodglass Mentor
ravenwoodglass
Posted
I had my celiac panel ran and it came back normal per the doc. My middle daughter has celiac disease and I have tried to be very careful. could I have something going on with my pancreas? I need to know what other tests should I be asking my doctor to run. Any Ideas?

Have they done any stool testing? That would be one thing I would ask about. Whether you have something going on with your pancreas I can't answer that but I would ask the doctor about it. Hopefully others will be on soon with some more ideas for you.

Paul1 Newbie
Paul1
Posted

I have a number of lab report places bookmarked and I checked. Found one site that mentioned symptoms for a low A-P:

Open Original Shared Link

Claims it can be decreased in the following scenarios: Hypothyroidism, Malnutrition, Pernicious anemia, Scurvy, Celiac disease, High Vit. B intake.

scottcolleenb Newbie
scottcolleenb
Posted
  • Author
I have a number of lab report places bookmarked and I checked. Found one site that mentioned symptoms for a low A-P:

Open Original Shared Link

Claims it can be decreased in the following scenarios: Hypothyroidism, Malnutrition, Pernicious anemia, Scurvy, Celiac disease, High Vit. B intake.

Thank you for the info.... :D

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dilettantesteph Collaborator
dilettantesteph
Posted

It is possible that your diet isn't as gluten free as you think. You could try a really basic diet of fruit, vegetables, meat and whole grain rice and quinoa for a couple of weeks and see if that helps.

  • 2 weeks later...
sophiejay Newbie
sophiejay
Posted
:( I am 31 years old and was diagnosed with Celiac disease in 2004. I have been on a pretty strict gluten free diet. Every once in a while I will find something that will have gluten in it. Since Aug 2008 I have been having chronic diarrhea, bloating, abd pain that goes on and off, tired, fatigue and have nausea from time to time. I had 2 colonoscopies and they both came back fine. NO doctors had done blood test to check anything else out. I finally found a doctor that ran blood tests. Everything came back normal but my lipase levels and alkaline phosphatase were alarmed low. What is wrong with me? I am lost and need to find out what is going on...Help me!! :huh:

Hello, I just wanted to say that I too had terrible diarrhea for months after going gluten free, my nutritionist advised me to take digestive supplements which had protease, amylase and lipase in them as well as pepsin and betaine. I had to take them for a few months but I soon felt better and little by little my stomach got better and now I only really get diarrhea when I accidently eat gluten. This really helped me, I also take glutamine to help heal the intestinal lining and probitoics for good bacteria. This worked for me, but it did take a while. Now I'm alot better and I can mostly eat without problems. I hope this helps you, I also think seeing a good nutritionist is a good idea too. Good luck and god blessx

Jenny (AZ via TX) Enthusiast
Jenny (AZ via TX)
Posted

It took me a while before I had normal stools, about 8-9 months. I didn't have diarrhea every day but I did have soft stools. I probably should have given up dairy in the beginning, but I didn't. That may have been a problem. I still eat dairy, but I must have healed enough that it doesn't bother me. Also, depending on what the dairy is, I will take a Lactaid. I understand Lactaid will not work if you have a casein intolerance. Also, I had to give up coffee the first few months. It really upset my stomach in the beginning. Peanuts also did not sit well with me.

Since the beginning and actually even before being diagnosed, I have been taking probiotics and digestive enzymes. Actually a lot of supplements. Am now taking thyroid meds too.

You'll get there. Double check everything that goes in your mouth. In the beginning I was eating a rotisserie chicken which I thought was gluten-free, but found out about a month later it was not gluten-free. I simply read the Safeway gluten free list wrong and though deli roasted chicken was the rotisserie chicken.

chatycady Explorer
chatycady
Posted

Some of us celiacs don't get better on only a gluten free diet. You may want to check out the Specific Carb Diet under Leaky Gut and other Food intolerances. Many of us have gotten better on it. It is a different version of gluten free.

Take care. You can get better!

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    • par18
      Is it gluten?

      By par18 · Posted

      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
    • par18
      IBS-D vs Celiac

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      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free condition. I was diagnosed over 20 years ago and have been symptom free only excluding wheat, rye and barley. I tolerate all naturally gluten free whole foods including things like beans which actually helps to form the stools. 
    • trents
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      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
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      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
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