Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Please Help Me....i Am Lost!

scottcolleenb

Recommended Posts

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:

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. suek54
      - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

      Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later. The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied...
    2. knitty kitty
      - knitty kitty replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too. I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy). Niacin has been used since the 1950's to improve dermatitis herpetiformis. I try to balance my iodine intake (which will cause flairs...
    3. suek54
      - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me...
    4. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

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

      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when...
    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

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

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt. I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,258
    • Most Online (within 30 mins)
      7,748
    Tdodge
    Newest Member
    Tdodge
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • suek54
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By suek54 · Posted

      Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later.  The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied, no chance if recovery there. But I am in touch with some secondaries, so something to bear in mind. .  Niacin B3 Very interesting too. Must have a good read about that.  Im sure lots of questions will arise as I progress with dermatitis herpetiformis. In the mean time, thanks for your help.
    • knitty kitty
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By knitty kitty · Posted

      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too.  I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy).  Niacin has been used since the 1950's to improve dermatitis herpetiformis.   I try to balance my iodine intake (which will cause flairs) with Selenium which improves thyroid function.   Interesting Reading: Dermatitis herpetiformis effectively treated with heparin, tetracycline and nicotinamide https://pubmed.ncbi.nlm.nih.gov/10844495/   Experience with selenium used to recover adrenocortical function in patients taking glucocorticosteroids long https://pubmed.ncbi.nlm.nih.gov/24437222/   Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide https://pubmed.ncbi.nlm.nih.gov/30390734/   Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Nicotinic acid therapy of dermatitis herpetiformis (1950) https://pubmed.ncbi.nlm.nih.gov/15412276/
    • suek54
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By suek54 · Posted

      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.