Celiac Likely, Or Just Gluten Sensitive?

[Hedgehog]

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

 

[mamaw]

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]

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]

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]

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]

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]

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!! 

[Hedgehog]

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]

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]

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]

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...