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. Scott Adams
      0

      Celiac Diner Sues Olive Garden After Gluten Mix-Up Leads to Medical Emergency (+Video)

    2. knitty kitty
      - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed. Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    3. knitty kitty
      - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

      Hello, @Jordan Carlson, So glad you're feeling better. Tecta is a proton pump inhibitor. PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12. Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the...
    4. knitty kitty
      - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1. There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine. In Thiamine deficiency, the body...
    5. Scott Adams
      0

      Inmate with Celiac Disease Wins $630,000 After Jail Denies Gluten-Free Food

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,024
    • Most Online (within 30 mins)
      7,748
    Sunset Blue
    Newest Member
    Sunset Blue
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Fruits & Veggies

      By knitty kitty · Posted

      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Positive biopsy

      By trents · Posted

      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
      Positive biopsy

      By pothosqueen · Posted

      26F!
×
×
  • 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.