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

Celiac Likely, Or Just Gluten Sensitive?

Hedgehog

Recommended Posts

Hedgehog Newbie
Hedgehog
Posted

Hi all,

 

I have been gluten-free (but not super strict) for almost 12 months. I know I have issues with gluten, but I tested negative for Celiac in a previous blood test...does this definitely mean I don't have Celiac?

 

When I do (on rare occasions) regrettably eat wheat, I get the following:

- peeling/flaking skin on my temples and scalp

- aching knee joints when going up stairs

- what might be blood in my stools - it is deep rusty color, so hard to tell

- sometimes slight stomach discomfort, but pretty mild

- sometimes stomach bloating

- feeling very fatigued (suspect this could be tied to the possible blood in stools?)

 

I generally have the following (whether avoiding gluten or not)

- thyroid tends to hypo side but seems to respond well if I take care of it and eat well, rest etc, and take a tiny amount of Lugol's

- anemic - to the point where I used to pass out when I had peroids

- anemia also caused my periods to be monstrous - enormous clots the size of an orange, severe fatigue and brain fog etc

- chronic constipation

- ADD/brain fog

- prone to candida

- had childhood eczema - it is now confined only to my ear canals, which itch terribly on occasion

 

When I ate wheat regularly I was an absolute addict...I loved and craved the stuff, and felt "empty" without it in every single meal. When I first stopped wheat my stomach growled a lot! I also experience a lot of bloating and lower abdominal discomfort when I eat wheat regularly, but for the odd infraction I seem to be okay in that regard.

 

Is it possible I have Celiac and it was missed somehow? Or are these symptoms also pretty typical of an intolerance? My mother also can't tolerate wheat (but also tested negative for Celiac with a blood test), and on my maternal side we have diabetes, chronic fatigue, MS and cystic fibrosis. Not sure which of those are linked if any, but I understand genetics play a role. My kids also both have severe and chronic eczema which is the misery of our lives.

 

Would love feedback and whether testing is something worth pursuing in our case!

 

H

 

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

Celiac.com Sponsor (A8-M):


mamaw Community Regular
mamaw
Posted

Hello & Welcome

wow, you have quite a laundry list...your blood work may be not accurate if you were already cutting out wheat. For correct blood work one needs to be consuming lots of wheat. Some say at least two to four slices of bread on a daily basis or some equivalent to that amount...

Many of your laundry list is relative to celiac & other illness' as well...

Plus wheat can give an opiate feeling , an overwhelming feeling as needing more & more.

so Yes, I think you could be celiac or gluten sensitive, either way the outcome is the same: A Strict Following OF THE GLUTEN FREE DIET>.

You could do lots of gluten eating for a few weeks or longer & get blood work again, eat gluten & get a endo with 5-6 biopsies',

There is no testing at present to say if you are gluten sensitive, only an elimination of wheat, rye & barley & see if you feel better....

There is also HLA testing where you need not be full of gluten but again it will only tell what if any gene you have in regards to celiac. That does not mean if you have a celiac gene that you will automatically have celiac. It only means you may at same point in your life develop celiac. With that being said there are thousands with the celiac gene who NEVER get celiac....If you do not have any celiac gene (some not even discovered yet) it is fairly clear you probably will never develop celiac....

hth

w8in4dave Community Regular
w8in4dave
Posted

Does t really make a difference if your Celiac or as you put it "Just Gluten sensitive" I'd take the word "just" out of that equation , it doesn't make you any less tolerant.  Any hoo if you have a long list of symptoms you know is from eating Gluten , then really does it matter if you have Celiac or not? my goodness I didn't symptoms quite as bad as you and my Celiac blood test came back positive for Celiac. If it makes those symptoms go away then go ahead and stay off of gluten. My theory is if something makes you sick stay away from it!! Why punish your self over the test? Of course it is up to you, If you have to feel validated to be Celiac. But truly if it was me, id just stay away from gluten. It is a personal choice, good luck!! I hope you can find a happy and calm ending :)

cyclinglady Grand Master
cyclinglady
Posted

I'm newly diagnosed with celiac disease and my husband has been gluten-free for 12 years.  Not sure if he has celiac disease or intolerance, but what does it matter?  He knows gluten makes him sick.  He also adheres to the diet and does not cheat (except for unintentional glutening usually while traveling).    He refuses to do a gluten challenge and I don't blame him!   Along with celiac disease, I have anemia and thyroiditis which is what caught the attention of my doctor.  I did not have any intestinal symptoms (except when I ingested milk, garlic or eggs).  So, you're definitely on to something!  You might just be developing celiac disease.  In any case, celiac disease can cause severe damage if it's not caught early, so it's good that you are researching.  You are your best advocate!

 

 

That said, you mentioned eczema, which reigns in our extended family,including asthma.  Everyone has seen vast improvement when allergies have been identified and avoided or eliminated (e.g. cow's milk protein or eggs).  If you are intolerant to gluten, chances are you have issues with other foods and environmental things (e.g. pollens, mites, cats, etc.)

 

Good Luck! 

Hedgehog Newbie
Hedgehog
Posted
  • Author

Thanks for your replies! 

 

I agree it doesn't matter about Celiac vs. Gluten intolerant for myself - I know wheat harms me. The main reason I'm wondering (and should have put this in my sleep-deprived post) is because I have 2 kids with severe eczema and numerous food intolerances, who often feel cold (and we live in a tropical climate!) and have ADD type behavior at times (I know certain foods are definite "triggers" for this)...

 

I don't want to put them through an unnecessary biopsy or more misery than they have already endured.

 

If I go through the eating lots of wheat and getting tested properly as suggested, and I do have Celiac, does this mean they are likely to have it too (or at least be intolerant)? Is there anything I can do to minimize risk for them in the future, other than adopting a strict gluten free diet for life?  I don't have an issue with gluten free cooking etc myself, the hard part is the lack of spontaneity, being able to join in at social things and parties etc. Because the kids are also avoiding eggs, dairy, corn...the is hard in addition to the gluten.

 

I understand there is some link between Celiac and eczema. We accidentally ate wheat yesterday (in soy sauce) and both kids had HUGE eczema flare ups. Can't be sure the wheat was the cause, but I assume it might be since we have been avoiding it so much, and they have probably only had tiny exposures (accidentally/contaminants) until yesterday.

 

Thanks again for your experience and advice :)
H

nvsmom Community Regular
nvsmom
Posted

It might be a good idea to test the kids just in case your tests were wrong. My cousin's son was recently diagnosed with his only symptoms being ADHD and some cognitive issues. NCGS can lead to ADHD as well, so you might want to consider making the whole family strictly gluten-free once any testing is done. Best wishes.

w8in4dave Community Regular
w8in4dave
Posted

Really best wishes!! Iknow I celiac, my Daughter has alot of symptoms, she was tested negative, the thing is my Daughters mother in law has it! So her children have a double whammy!! She decided to go on the cave man diet (Forgot the name) her son also is HDAD and it truly helps!! She can tell when the neighbors slip him something!! 

Your kids may or may not be positive , but doesn't mean they are not sensitive. I believe it is a very healthy diet. As long as your eating a nice square meal!! :) I feel like this Gluten is Glutton, If I eat gluten I am a Glutton for punishment...haha good luck!! I am sure I didn't answer anything for you sorry!! 

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

Celiac.com Sponsor (A8-M):


Hedgehog Newbie
Hedgehog
Posted
  • Author

Thank you so much - so you think the biopsy is the best thing for the kids, even if the blood test doesn't pick it up, and even if we plan to go gluten free at home anyway?

 

My husband (who honestly doesn't care if he is gluten sensitive or not - nothing will stop him eating the stuff!) would be the only gluten eater in the family, and while I hate to restrict him at home, I am thinking this is probably the best for all of us....

 

For those few things he might miss, I will get a bread machine and make it strictly gluten-free and get rice pasta. Soy sauce is something he loves, but Tamari is gluten-free.

Gluten is just one of our intolerances, so I'm fully prepared to adapt to that if it means health for us all.

 

I just don't see the point in putting my kids (and myself) through blood tests and biopsies if we are going to do this anyway....is it really necessary?

w8in4dave Community Regular
w8in4dave
Posted

I think you answered your own question. I'd still have the test. I have just been DX'd and I am going to have the test anyway. What if there is another underlying problem? And if your ins. pays for it then ???? well I'd do it!!

 

My husband eats tons of Gluten!! I think he is kinda slowing down a bit tho, since I have been dx'd only because he wanted to order pizza the other night , I said you order pizza I will have a bowl of soup. He said they have salads and stuff. I said the chicken doesn't say if it is breaded or not and really I am hungry, I don't want a lettuce dinner. I knew this place was just a gluten nightmare , so he didn't order pizza ... he found something eles :) I had progresso clam chowder!! :) 

nvsmom Community Regular
nvsmom
Posted

One of the main reasons that people get a firm diagnosis for their kids is so accomodations can be made for them at school. That's not an issue for everone though. I think you should at least try the blood tests before going gluten-free.

 

This report has lots of good info and discusses the tests beginning on page 11. Open Original Shared Link

 

Best wishes.

Hedgehog Newbie
Hedgehog
Posted
  • Author

One of the main reasons that people get a firm diagnosis for their kids is so accomodations can be made for them at school. That's not an issue for everone though. I think you should at least try the blood tests before going gluten-free.

 

This report has lots of good info and discusses the tests beginning on page 11. Open Original Shared Link

 

Best wishes.

Thank you - that is so helpful to know. Even though our school were really cooperative and tried hard, it was quite a challenge and we dealt with numerous accidental gluten exposures...

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. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748
    Kristy2026
    Newest Member
    Kristy2026
    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

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.