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

Do You Have To Be Anemic To Have celiac disease?

BeckyW

Recommended Posts

BeckyW Contributor
BeckyW
Posted

Hi, we are new to celiac disease. They think my teenage daughter may have it. She tested positive on the Ttg and had a biopsy today. She has lost so much weight and is malnourished and dehydrated. Everything at this point that she eats is making her sick. We are waiting for the biopsy results next week for the "real" diagnosis. The doctor keeps saying she is not a classic case of celiac disease as she is not anemic. Do you have to be anemic to be celiac disease? Also, how soon after you eat gluten do you get a reaction? She ate some yesterday for the scope today and she felt sick about 20-30 minutes after. He said that is too soon. I am very frustrated as I feel the blood tests are accurate enough but the doctors seem to need a positive biopsy. It is so hard watching my daughter suffer and not know how to help her. We did start gluten-free a few days ago. Thank you for any help you can give us!

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

Celiac.com Sponsor (A8-M):


SueC Explorer
SueC
Posted

Anemia is just one possible symptom of celiac. It is not necessary to be anemic to have celiac disease. Your doctor is misinformed :angry:

An immediate reaction is also a commom thing. With an elevated tTg she has celiac disease and the biopsy will tell you how damanged her bowel is. Start her on the gluten free lifestyle. She will feel better but it may take awhile. Tell her to stick with it. It is not easy at first but will get much easier with time and as she starts to feel better she will realize it is worth it.

Good luck yo you and your daughter, I hope she feels better soon.

jerseyangel Proficient
jerseyangel
Posted
Hi, we are new to celiac disease. They think my teenage daughter may have it. She tested positive on the Ttg and had a biopsy today. She has lost so much weight and is malnourished and dehydrated. Everything at this point that she eats is making her sick. We are waiting for the biopsy results next week for the "real" diagnosis. The doctor keeps saying she is not a classic case of celiac disease as she is not anemic. Do you have to be anemic to be celiac disease? Also, how soon after you eat gluten do you get a reaction? She ate some yesterday for the scope today and she felt sick about 20-30 minutes after. He said that is too soon. I am very frustrated as I feel the blood tests are accurate enough but the doctors seem to need a positive biopsy. It is so hard watching my daughter suffer and not know how to help her. We did start gluten-free a few days ago. Thank you for any help you can give us!

Hi Becky--welcome to the board! :)

You do not have to be anemic to have Celiac. Anemia is a common symptom, but it is certainly possible to have Celiac without it. People feel the effects of gluten anytime from immediately, to a day or so later--sometimes longer. It varies greatly from person to person. 20-30 minutes is not unusual at all. Doctors seem to always want that positive biopsy, but I tend to think the positive bloodwork is proof enough. If the gluten-free diet is helping her, that is further proof. The biopsy can also miss the affected areas. Keep in mind that there are some 200 symptoms of Celiac--doctors looking for the "classic case" are a big reason this disease is so under diagnosed. No matter what the outcome of the biopsy, I hope that your daughter will listen to her body, and go completely gluten-free right now and begin to heal. I was not diagnosed until last year at age 49. I have a lot of problems stemming from being undiagnosed for many years.

I would sugest reading through some of the old posts--there is a lot of great information here! Always feel free to post with any questions you or your daughter may have. We have a forum here for teenagers--if it's ok with you, she may want to check that out. There are lots of kind, knowledgeable people here who have been through this and would be glad to help. :)

mart Contributor
mart
Posted

Hi Becky. Sorry your doctor is so misinformed. My son was very sick, thin, and his villi was completely flat. Yet he wasn't the least bit anemic. Some celiacs don't have flattened villi, yet they are anemic. Go figure! :blink: Was this doctor a gastroenterologist? You need to find a good one, would be nice if he was very knowledgeable about celiac disease. Please start your daughter on a complete gluten free diet. She will get better soon. Could be weeks or months, but some people start to feel better right away. Hope she heals quickly!

elonwy Enthusiast
elonwy
Posted

I've never been Anemic in my life. If anything, I lean the other way, as does my mother, who also has Celiac. My doctor said I couldn't have it without family history, I demanded the test anyway, and then we find out after that, other people including my mother have it and had no idea. They don't know everything.

I also often feel sick immediatly after eating gluten, sometimes even before I'm done eating, so that's a load of hooey too. My most immediate reaction was about 3 minutes after I had taken a bite of the wrong appetizer I threw up. Sorry your doctor is being a pain.

Good luck.

Elonwy

skoki-mom Explorer
skoki-mom
Posted
Hi, we are new to celiac disease. They think my teenage daughter may have it. She tested positive on the Ttg and had a biopsy today. She has lost so much weight and is malnourished and dehydrated. Everything at this point that she eats is making her sick. We are waiting for the biopsy results next week for the "real" diagnosis. The doctor keeps saying she is not a classic case of celiac disease as she is not anemic. Do you have to be anemic to be celiac disease? Also, how soon after you eat gluten do you get a reaction? She ate some yesterday for the scope today and she felt sick about 20-30 minutes after. He said that is too soon. I am very frustrated as I feel the blood tests are accurate enough but the doctors seem to need a positive biopsy. It is so hard watching my daughter suffer and not know how to help her. We did start gluten-free a few days ago. Thank you for any help you can give us!

Pretty much ditto what the others said. My sister (celiac disease) was so anemic when she was diagnosed she nearly needed a transfusion. I was not anemic at all, and never have been. celiac disease can present in many ways, or in my case, not at all. I am definitely not "classic". I hope your DD feels better soon.

Kaycee Collaborator
Kaycee
Posted

I am one of those who has not been anaemic with coeliac.

I have at times been low in my iron levels, as when I was pregnant with my children. I needed to take spplements then. Last year before diagnosis my iron levels were low, but nothing to worry about, but I opted to take an iron supplement, so by the time I was diagnosed earlier this year.

So yes you don't need to be anaemic to be coeliac.

Cathy

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

Celiac.com Sponsor (A8-M):


Ursa Major Collaborator
Ursa Major
Posted

Hi Becky! Your doctor is apparently quite ignorant of celiac disease. All last summer, before figuring out I have celiac disease and went gluten free, my food went right through me within at the most 30 minutes every time, no matter what I ate. When your villi are severely damaged, that will happen. And of course, as others said, some people with celiac disease are anemic, while others are not.

If the biopsy has been taken, it's time to go back to being completely gluten-free, no time to waste! Your daughter needs to get well, so she can enjoy her summer with her friends and feel better.

The positive blood test combined with the diet improvement is really all the evidence you need, to know she has celiac disease.

Girl Ninja Newbie
Girl Ninja
Posted

It seems to me we're sort of like snowflakes. So many variations on the theme! My main symptoms were migraines and hives. Other symptoms would come and go, but I got hives and headaches almost every day. I don't believe I was ever anemic.

flagbabyds Collaborator
flagbabyds
Posted

they told me that i couldn't have it just because i was constipated, yes this was 14 years ago, but still, there are SO many symptoms of celiac, that you really can't diagnose someone by just one symptom that they don't have, you have to look at the big picture.

About the soon after eating stuff, it could be that she already has gluten in her system and that her intestines are damaged, and whenever she eats anything she will get sick, it doesn't matter if it is gluten or not.

Hops she gets a diagnosis soon, and I am 16(on wed!) and if she needs a teen to talk to i can talk to her about the diet if she is diagnosed.

BeckyW Contributor
BeckyW
Posted
  • Author

Thank you all for your replies, help and support! This message board is just wonderful. I have learned more from everyone than the doctor!

This is the second doctor I took my daugther to and he was much better than the first. The first said she was anorexic and I told him he was wrong! Hopefully we will find out the biopsy results the beginning of this week.

She tested positive on the tTg and the Endomysial AB, IgA screen with a none detected Endo, IgA Titer. Can anyone explain the tests alittle more? The new doctor did more testing and I think he did five tests.

My daughter is so thin and was dehydrated (I think that is better now) but if she gets dehydrated again they want to hospitalize her. My second question is how do you eat and drink when everything makes your stomach hurt, gasey and bloated?

My third question is is there anything to do when your stomach feels so full and you are bloated?

She was gluten free a few days before the scope then the day before the doctor wanted her to eat the gluten. She has not had any since Thursday so we are only basically on day 3 of gluten-free. The waiting to see improvement is so hard!

Molly - my daughter has tried to IM you and it shows you are on a cell phone and it won't go through. Is there any way for her to email or IM you? I think it will help alot for her to talk to another teen with the same problem.

Thank you all for your help! I really appreciate it.

Becky

Ursa Major Collaborator
Ursa Major
Posted

Becky, most celiacs are initially dairy intolerant.........some can have dairy again after about a year, when the villi are healed enough to produce lactase to digest the dairy.

The bloating could be due to dairy, even off gluten. Try eliminating dairy and see if that helps.

Why don't you have your daughter sign up here as well, and post in the teen forum (or wherever she likes, of course)? Then she can just pm Molly, or post and get lots of responses. She wouldn't feel so alone then.

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

      results from 13 day gluten challenge - does this mean I can't have celiac?

      I am doing a gluten challenge right now and I bought vital wheat gluten so I can know exactly how much gluten I am getting. One tablespoon is 7g so 1½ tablespoons of Vital Wheat Gluten per day will get you to 10g You could add it to bean burgers as a binder or add to hot chocolate or apple sauce and stir.
    2. Scott Adams
      0

      Celiac Disease Beyond the Western World: Hidden Populations, Changing Diets, and Growing Awareness

    3. Wheatwacked
      - Wheatwacked replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium. A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake. With low D your body is not absorbing calcium from your food so it steals it from your bones. Heart has priority over bone. I've been taking 1...
    4. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, Wheat germ has very little gluten in it. Gluten is the carbohydrate storage protein, what the flour is made from, the fluffy part. Just like with beans, there's the baby plant that will germinate ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein. Wheat germ is the baby plant inside a kernel of wheat...
    5. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3. Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C. Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine. Weight...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,357
    • Most Online (within 30 mins)
      7,748
    Tomo
    Newest Member
    Tomo
    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

    • SilkieFairy
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By SilkieFairy · Posted

      I am doing a gluten challenge right now and I bought vital wheat gluten so I can know exactly how much gluten I am getting. One tablespoon is 7g so 1½ tablespoons of Vital Wheat Gluten per day will get you to 10g You could add it to bean burgers as a binder or add to hot chocolate or apple sauce and stir. 
    • Wheatwacked
      Supplements for those Diagnosed with Celiac Disease

      By Wheatwacked · Posted

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium.  A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake.  With low D your body is not absorbing calcium from your food so it steals it from your bones.  Heart has priority over bone. I've been taking 10,000 IU D3 a day since 2015.  My doctor says to continue. To fix my lactose intolerance, lots of lactobacillus from yogurts, and brine fermented pickles and saurkraut and olives.  We lose much of our ability to make lactase endogenosly with maturity but a healthy colony of lactobacillus in our gut excretes lactase in exchange for room and board. The milk protein in grass fed milk does not bother me. It tastes like the milk I grew up on.  If I drink commercial milk I get heartburn at night. Some experts estimate that 90% of us do not eat Adequite Intake of choline.  Beef and eggs are the principle source. Iodine deficiency is a growing concern.  I take 600 mcg a day of Liquid Iodine.  It and NAC have accelerated my healing all over.  Virtually blind in my right eye after starting antihypertensive medication and vision is slowly coming back.  I had to cut out starches because they drove my glucose up into the 200+ range.  I replaced them with Red Bull for the glucose intake with the vitamins, minerals and Taurine needed to process through the mitochodria Krebs Cycle to create ATP.  Went from A1c 13 down to 7.9.  Work in progress. Also take B1,B2,B3,B5,B6. Liquid Iodine, Phosphatidyl Choline, Q10, Selenium, D and DHEA.     Choline supplemented as phosphatidylcholine decreases fasting and postmethionine-loading plasma homocysteine concentrations in healthy men +    
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Florence Lillian · Posted

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
×
×
  • 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.