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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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      How Come Gluten Didnt Bother Me In Italy

      By Theresa2407 · Posted

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    • Gigi2025
      How Come Gluten Didnt Bother Me In Italy

      By Gigi2025 · Posted

      Thanks much Scott.  Well said, and heeded.   I don't have Celiac, which is fortunate.
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      It is odd that your Tissue Transglutaminase (TTG) IgA level has bounced from the "inconclusive" range (7.9, 9.8) down to a negative level (5.3), only to climb back up near the positive threshold. This inconsistency, coupled with your ongoing symptoms of malabsorption and specific nutrient deficiencies, is a strong clinical indicator that warrants a more thorough investigation than a simple "satisfactory" sign-off. A negative blood test does not definitively rule out celiac disease, especially with such variable numbers and a classic symptomatic picture. You are absolutely right to seek a second opinion and push for a referral to a gastroenterologist. A biopsy remains the gold standard for a reason, and advocating for one is the most direct path to getting the answers you need to finally address the root cause of your suffering. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
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      By Scott Adams · Posted

      There is a distinction between gluten itself and the other chemicals and processing methods involved in modern food production. Your experience in Italy and Greece, contrasted with your reactions in the U.S., provides powerful anecdotal evidence that the problem, for some people, may not be the wheat, but the additives like potassium bromate and the industrial processing it undergoes here. The point about bromines displacing iodine and disrupting thyroid function is a significant one, explaining a potential biological mechanism for why such additives could cause systemic health issues that mimic gluten sensitivity. It's both alarming and insightful to consider that the very "watchdog" agencies meant to protect us are allowing practices banned in many other developed countries. Seeking out European flour and your caution about the high-carb, potentially diabeticgenic nature of many gluten-free products are excellent practical takeaways from your research, but I just want to mention--if you have celiac disease you need to avoid all wheat, including all wheat and gluten in Europe.
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