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

Mild Case Of Celiac Disease

GF ME

By GF ME
in Coping with Celiac Disease

Recommended Posts

GF ME Newbie
GF ME
Posted

I had my endocopy on 7/12. It was confirmed that I had a mild case of celiac/sprue and that I should stick to the gluten free diet. The only thing that I really changed is not eating pasta, bread and the obvious gluten-free products. I watch how I prepare stuff, but I enjoy going out. But does anyone know how strick I really have to be with this if I only have a mild case?

I still use the same shampoo, toothpaste, lotion, etc. Am I not healing at all if I don't follow this diet to a 'T'?

This is very confusing to me. I feel better and I am not getting glutened hardly at all.

Can anyone shed some light on this or should I see a dietician or a support group?

Thanks!

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

Celiac.com Sponsor (A8-M):


swittenauer Enthusiast
swittenauer
Posted

I've never heard of a mild case. I thought you either had it or didn't have it. I would recommend being 100% gluten free.

CarlaB Enthusiast
CarlaB
Posted

It's really not accurate for them to have told you "mild case" of celiac. You either have it or you don't! Mild can only refer to the level of damage you have. If it's only a mild level of damage, you are very lucky that it didn't take very long and a lot more damage to discover the celiac! You need to be entirely gluten-free because the mild damage can get worse and certainly won't get better if you still consume gluten.

Welcome to the board.

beaglemania Rookie
beaglemania
Posted

I'm like you I only have a mild case, my only serious effect I've gotten from Celiac Disease is osteoporosis. I've stuck with all my regular toothpastes and shampoos and I feel fine. The best gluten-free pasta is BiAglut go to glutensolutions.com I love it!! Tastes like regular pasta. No way to reheat gluten-free pasta's though. For bagels, english muffins, all bread products go to glutino.com. Awesome poppy seed and plain bagels and breads!!

Don't eat anything with gluten though still. If you go out to eat beware of sauces and croutons on salads and dedicated fryers for french fries.

2kids4me Contributor
2kids4me
Posted

I also have never heard ofa mild case of celiac - its kinda like being "a little pregnant".

My kid's GI doc refered to the changes on my daughters biopsy as mild to moderate but followed that by ...conclusive evidence of celiac disease. The biopsy had patchy areas... My son's biopys was severe with subtotal villous atrophy on all biopsies taken from the duodenum. Symptom wise - mydaughter had more serious outward signs and my son had mild stomach aches and joint pain (+ bed wetting that stopped after going gluten-free).

You cannot rely on outward symptoms - celiac is celiac just like pregnant is pregnant.

Guest southgoingzax
Guest southgoingzax
Posted

All true. Some people may have a different level of sensitivity - i.e. a tiny bit of gluten makes them sick, while other people can even drink a beer without noticing any ill effects. That being said, just because you don't NOTICE any symptoms doesn't mean no harm is done. The very best thing for your health is to be completely gluten-free - otherwise, your "mild" celiac could turn into a laundry list of associated illnesses and conditions (chronic joint pain, headaches, brain fog, numb or weak legs and arms, thyroid issues, diabetes, cancer, depression, vitamin deficiencies, etc., etc).

It is your choice, but maybe you should do a little more research into the matter before making a decision, good luck,

zax

GF ME Newbie
GF ME
Posted
  • Author

Thanks for all your responses. That makes so much more sense. I will look into getting a dietician. Does anyone know of any in Southern New Jersey/Philadelphia area?

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

Celiac.com Sponsor (A8-M):


BBadgero Newbie
BBadgero
Posted

I agree with everyone - have it or not. But the true test is not getting tagged. One question - how often does it take some of you to notice you "totally ate gluten"? Sometimes for me it is within the hour - but could be in my head sometimes too? A little help from the "veterans"?

Also, anyone have a forum yet on here to address specific foods? I have done some research on certain medicines (Tylenol, Allegra, and Tagament) that have been confirmed gluten-free. If there is a forum on here where that can be shared - I can't find it yet.... :blink:

Lisa Mentor
Lisa
Posted

Delfi Forums has a Gluten Free Product list which is very helpful in the beginning.

Nini on this site has a beginners list of just about everything. PM her and she will send it on.

Lisa

2kids4me Contributor
2kids4me
Posted
I agree with everyone - have it or not. But the true test is not getting tagged. One question - how often does it take some of you to notice you "totally ate gluten"? Sometimes for me it is within the hour - but could be in my head sometimes too? A little help from the "veterans"?

I can only answer for my daughter - she will get a migraine/stoamch ache wuthin 1 -2 hrs after exposure. Once it was inhaled gluten (playing in an empty grain bin with cousins on a farm) - she got a headache within an hour and felt crappy (fatigue, headcahe, tummy ache) for the next 24 hours

maggee Newbie
maggee
Posted
Thanks for all your responses. That makes so much more sense. I will look into getting a dietician. Does anyone know of any in Southern New Jersey/Philadelphia area?

Be sure your dietician / nutritionist has experience with celiac. When my son was diagnosed we were referred to a nutritionist. When we met with her she had to go "dig-up" a list of allowable foods on a gluten free diet. Top of the list was a burger king burger - "just remove the bun" :o

By the end of our visit she admitted I already knew more than she did about the diet (and that was only about half of what I should have known at the time).

sorry I don't have a recommendation in your area but I used books as a starting point (Danna Korn - "Wheat Free Worry Free"). And I check out the info here for updates on gluten-free products.

Good Luck.

JenAnderson Rookie
JenAnderson
Posted

I was diagnosed with a "mild case" and I can tell you honestly that you have to follow the diet. I tried not to at first and it almost killed me. I still use the toothpaste and shampoos that I usually would have, but I have to be conscious of everything that I injest. I have had severe bone pain, and brain fog, and vitamin deficiencies just having a few crumbs from the butter tub. I don't have DH, and all the other things. All I can tell you is that you need to follow the diet. There will be so much of a difference.

debmidge Rising Star
debmidge
Posted
All true. Some people may have a different level of sensitivity - i.e. a tiny bit of gluten makes them sick, while other people can even drink a beer without noticing any ill effects. That being said, just because you don't NOTICE any symptoms doesn't mean no harm is done. The very best thing for your health is to be completely gluten-free - otherwise, your "mild" celiac could turn into a laundry list of associated illnesses and conditions (chronic joint pain, headaches, brain fog, numb or weak legs and arms, thyroid issues, diabetes, cancer, depression, vitamin deficiencies, etc., etc).

It is your choice, but maybe you should do a little more research into the matter before making a decision, good luck,

zax

I second this. Did Dr. tell you it's a mild case or is that how you view it as you get little or no known symptoms?

I'd worry about the silent neurological damage, the connection between your eating gluten and arthritis, and the higher chance of cancer. All silent damage of course will not show up until years later and you'll then wish you were 100% gluten-free.

The people on this board offer a wealth of experience and information and I trust their opinions and instincts on Celiac.

loraleena Contributor
loraleena
Posted

There is no such thing as a mild case. You have it or you don't. Even if you don't feel sick, the tiniest amounts can do hidden damage. You need to be compeletely gluten free.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,144
    • Most Online (within 30 mins)
      7,748
    Jenny0384
    Newest Member
    Jenny0384
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      My migraines generally have their onset during the early morning hours as well. Presently, I am under siege with them, having headaches all but two days so far this month. I have looked at all the things reported to be common triggers (foods, sleep patterns, weather patterns, stress, etc.). Every time I think I start to see a pattern it proves not to pan out in the long run. I'm not sure it's any one thing but may, instead, be a combination of things that coalesce at certain times. It's very frustrating. The medication (sumatriptan or "Imatrix") is effective and is the only thing that will quell the pain. NSAIDs, Tylenol, even hydrocodone doesn't touch it. But they only give you 9 does of sumatriptan a month. And it doesn't help that medical science doesn't really know what causes migraines. They know some things about it but the root cause is still a mystery.
    • Scott Adams
      Tamale ingredients

      By Scott Adams · Posted

      These are labeled gluten-free: https://www.amazon.com/Corn-Husks-Tamales-Authentic-Flavorful/dp/B01MDSHUTM/
    • Wheatwacked
      GI DX celiac despite neg serology and no biopsy

      By Wheatwacked · Posted

      Just a gluten free diet is not enough.  Now you have to identify and replenish your malnutrition.  Celiac disease is co-morbid with malabsorption syndrome.  Low vitamin D, Low Thiamine caused Gastointeston Beriberi, low choline, low iodine are common the general population, and in newly diagnosed Celiacs in the western culture its is more likely.  It takes time to heal and you need to focus on vitamins and minerals.  Gluten free foods are not fortified like regular processed foods.  
    • Sarah Grace
      Headaches / Migraines and Hypoglycaemia

      By Sarah Grace · Posted

      Dear Kitty Since March I have been following your recommendations regarding vitamins to assist with various issues that I have been experiencing.  To recap, I am aged 68 and was late diagnosed with Celiac about 12 years ago.  I had been experiencing terrible early morning headaches which I had self diagnosed as hypoglycaemia.  I also mentioned that I had issues with insomnia, vertigo and brain fog.   It's now one year since I started on the Benfotiamine 600 mg/day.  I am still experiencing the hypoglycaemia and it's not really possible to say for sure whether the Benfotiamine is helpful.  In March this year, I added B-Complex Thiamine Hydrochloride and Magnesium L-Threonate on a daily basis, and I am now confident to report that the insomnia and vertigo and brain fog have all improved!!  So, very many thanks for your very helpful advice. I am now less confident that the early morning headaches are caused by hypoglycaemia, as even foods with a zero a GI rating (cheese, nuts, etc) can cause really server headaches, which sometimes require migraine medication in order to get rid off.  If you are able to suggest any other treatment I would definitely give it a try, as these headaches are a terrible burden.  Doctors in the UK have very limited knowledge concerning dietary issues, and I do not know how to get reliable advice from them. Best regards,
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
×
×
  • 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.