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

New Here With Questions!


RebeccaJeeper

Recommended Posts

RebeccaJeeper Newbie

Hello everyone!

I am writing as I have a few questions, and I thought this would be a good place to learn more about this topic and hear from those with experience!

Here is my situation: I have, for probably 7-8 years, had on and off symptoms of intermittent diarrhea and constipation, abdominal pain and cramping, very hyperactive (noisy) bowel sounds and gas. I have also been anemic consistently for over 8 years. I was anemic while pregnant with my daughter who is now 8, but was just told to take iron supplements, and attributed it to the pregnancy, however, it has never improved. I have attempted to donate blood twice and been turned down due to low Hgb, and my doctor has had it checked for a couple years and it is consistenly low. I am also very lethargic, tired, and at times irritable. I have no family history of celiac disease.

Now, the odd thing, is that I don't have symptoms consistently with certain foods, particularly those with gluten. Is this normal for celiac? I can eat things with gluten sometimes and be fine, then other times have horrible cramping and pain. I ate a handful of vanilla wafers last week and had the most horrible cramping, bloating and pain ever!

I have an appointment with a GI doctor in a few weeks-I assume he will likely do an upper endoscopy, but not sure yet. My regular doctor made the referral after I had a bout of a week of mucousy, blood tinged diarrhea, (which was likely a virus), but with all the other issues, she thinks there is something underlying, such as celiac, that needs to be figured out. I was surprised when the GI office called, they said the Dr. was going on vacation in August, but wanted to make sure he saw me before he went! I was glad, but it made me worry a bit more!

Sorry for the long post..thanks for reading this far and thanks in advance for any advice, help, and answers!

Rebecca


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



Celiac.com Sponsor (A8-M):



vbecton Explorer

Hello and welcome. As far as the intermittent symptoms, that can definitely be the case with Celiac. That was my problem. I'm a rigid, planned eater so I eat mostly the same things over and over again. Sometimes I would eat a sandwich and get awful bloated, gassy, rumbling, nauseous, headache symptoms, etc... Then, I eat the same sandwich 2 days later without any reaction. My other symptom was uncontrollable blood sugar. None of my doctors ever suspected Celiac or put two and two together that my blood sugar and bowels were connected. Just recently did my endocronologist suspect Celiac and sent me to a GI. So, my diagnosis is in the works and my endoscopy suggested Celiac. I would definitely look into it if I were you. Good luck!!

Skylark Collaborator

Fooey. double-post.

Skylark Collaborator

Hi and welcome.

My symptoms were intermittent too. Sometimes I would be fine, other times I would eat pasta and run for the bathroom a few hours later.

Keep following up with the GI doctor. Once you have all the testing done, even if it comes up negative you have enough symptoms that it's worth trying the gluten-free diet. The false negative rate for the tests is estimated to be as high as 20%, and that's not counting all the people who are not celiac but still feel better off gluten.

RebeccaJeeper Newbie

Thank you for the replies! Even being a registered nurse, I realy didn't know much about Celiac disease until my Dr. mentioned it as a possibility, and I started to do more research! After all these years of problems, maybe I will finally find a solution! I am a little worried about this diagnosis, as I know it will mean major diet changes, which can be difficult when you have to make meals for a fmaily, and not just yourself!

Until the work-up, I am just eating normally-I did dtart bringing some gluten-free snacks to work at night (I work midnight shift right now) as this seemed to be a very bad time for me to have symptoms, and it has helped. Otherwise, I will just keep eating what I usually do until testing is done.

Thanks again!

Skylark Collaborator

Thank you for the replies! Even being a registered nurse, I realy didn't know much about Celiac disease until my Dr. mentioned it as a possibility, and I started to do more research! After all these years of problems, maybe I will finally find a solution! I am a little worried about this diagnosis, as I know it will mean major diet changes, which can be difficult when you have to make meals for a fmaily, and not just yourself!

Until the work-up, I am just eating normally-I did dtart bringing some gluten-free snacks to work at night (I work midnight shift right now) as this seemed to be a very bad time for me to have symptoms, and it has helped. Otherwise, I will just keep eating what I usually do until testing is done.

Thanks again!

Don't worry too much. If you like to cook, the diet is not a big deal. Celiac is genetic and the highest risk factor for celiac disease is a first-degree relative that has it. If you turn out to be celiac, removing some wheat from your kids' diets would not necessarily be a bad thing.

Archived

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

  • 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. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

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

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

      Awaiting dermatitis herpetiformis confirmation following biopsy

    3. - knitty kitty replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

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

      Awaiting dermatitis herpetiformis confirmation following biopsy

    5. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,259
    • Most Online (within 30 mins)
      7,748

    Hidden Peacock
    Newest Member
    Hidden Peacock
    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

    • catnapt
      I wonder how long it usually takes and if it is dose dependent as well... or if some ppl have a more pronounced reaction to gluten than others   thanks again for all the great info    
    • suek54
      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
      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
      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
      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. 
×
×
  • 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.