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

Anemic


mrsnj91

Recommended Posts

mrsnj91 Explorer

Isn't this supposed to be a sign of Celiac too? I thought I read somewhere that it can be but....geeze....I have read so much it gets lost sometimes!! :P I just got back from my DD's ped last night and they told be that she was boarderline anemic. They are going to let it go as it was just slightly under the norm. But it perked my ears. I have an allergist appointment today and want to know if I need to mention it to him.


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



Celiac.com Sponsor (A8-M):



nettiebeads Apprentice

Anemia can be a symptom of celiac, but only one of 200 or so. I had a hard time donating blood because my count was too low until I finally cleared out the last of the gluten in my diet. I gave blood not too long ago - my hemocrit was 13! Highest ever! And I've always taken supplements with high iron, but it took me a long time even after going completely gluten-free to get my iron that high. But my DD was in the ER for female problems and hers was 10. And she doesn't have celiac. How old is your dd? Do you have her on supplements? Is there anything else about her health that has you wondering?

Annette

jenvan Collaborator

Kimberly--

Anemia is one of the more common Celiac symptoms...I had it severely for years. But, it can be caused by other things too. I would echo the questions that Annette asked you. What symptoms have caused you to think wheat allergy/celiac for you, and for your dd?

VydorScope Proficient
Isn't this supposed to be a sign of Celiac too? I thought I read somewhere that it can be but....geeze....I have read so much it gets lost sometimes!! :P I just got back from my DD's ped last night and they told be that she was boarderline anemic. They are going to let it go as it was just slightly under the norm. But it perked my ears. I have an allergist appointment today and want to know if I need to mention it to him.

First off, how old is your daughter? Form what I understand it is normal for some woman to be "slightly" anemic around thier menstral cycle.

Anemia was the first sympton that started me on the road that lead to a celiac disease dx so yes, its a common sympton.

mrsnj91 Explorer

She is only 1. So I don't think it is woman problems....yet! :D And she is on vits. but not iron.

Sorry....I guess I should have given more info....

She is currently being tested on a trial diet for wheat allergy but is showing problems with other grains (oats and barley) and yet tests neg. in allergy tests with the exception of the barley being boardline. Celiac was mentioned at the last visit. The fact that all her problems started with grains and surrounds grains I am thinking a visit to the GI might be where we are heading. She was fine till she was put on crackers,cookies, etc. When I remove them she is better. We have been on again and off again with grains since she was 7 months. She has done rather well on the trial diet. It was supposed to be just a wheat free diet but I had to remove the barley and now the oats. So we ended up on a gluten free diet.

I go back today to talk with the allergist about the trial and where we head from here.

Becky6 Enthusiast

My daughter was anemic at 9 weeks and her levels had dropped to 7! She was put on iron supplements and it stayed just under normal for a while. She finally got off of them at 1.5 years. But then had to go back on them at 2.5 years. She had celiac symptoms that whole time. She is doing much better now that she is gluten free. So yes it is a possiblity. Keep an eye on her cause it can drop really fast! Belle got really pale, was really fussy and was trying to chew on her clothes and everything at 9 weeks!

penguin Community Regular
First off, how old is your daughter? Form what I understand it is normal for some woman to be "slightly" anemic around thier menstral cycle.

That's a lazy doctor's analysis of anemia in women. Unless their period is really heavy or really long, women shouldn't be anemic. It's not like menstruation is a new thing in women, we've been doing it for thousands of years ;) The body knows how to adapt.


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



Celiac.com Sponsor (A8-M):



nettiebeads Apprentice
She is only 1. So I don't think it is woman problems....yet! :D And she is on vits. but not iron.

Sorry....I guess I should have given more info....

She is currently being tested on a trial diet for wheat allergy but is showing problems with other grains (oats and barley) and yet tests neg. in allergy tests with the exception of the barley being boardline. Celiac was mentioned at the last visit. The fact that all her problems started with grains and surrounds grains I am thinking a visit to the GI might be where we are heading. She was fine till she was put on crackers,cookies, etc. When I remove them she is better. We have been on again and off again with grains since she was 7 months. She has done rather well on the trial diet. It was supposed to be just a wheat free diet but I had to remove the barley and now the oats. So we ended up on a gluten free diet.

I go back today to talk with the allergist about the trial and where we head from here.

Sounds like mom's intuition is the best guide for you. Testing on children, especially that young, is very often inconclusive. So what you are doing is the diet challenge and that is a viable diagnostic tool. (it was how I was dx'd 9 years ago. Never had any of the "official" tests) Go with how your daughter is doing and her reactions to gluten and the gluten-free diet. If she's better and healthier going gluten-free, then stay with that. It's a healthy diet and not that difficult. After awhile it's second nature. Just be sure your dd is totally gluten-free - toiletries and such can harbor hidden gluten. Good luck!

mrsnj91 Explorer

We just returned from the allergist. He was not so happy with my results of the diet and the anemia. I should say he was happy that she has improved but was not happy with the fact that she reacted to either or both barley and oats. And he didn't like that I said that her diaper rash that I battle when she eats grains is around her anus and not a regular diaper rash all over. He frowned over the oat/barley reaction and that is it all coming from just grains. He asked if she ever had reactions to oats/barley before. I said I couldn't speak for the barley as it isn't something primary in her diet but I KNOW she has had bad reactions to oats. She tested neg. to oats in both the RAST and the skin scratch tests. :( So he said he just hates to "label" her Celiac and go down that road and is grasping at the fact that she has also had hives. So we are to continue on a gluten free diet until our wheat trial in office in two weeks. We had a talk about the possible results and the diagnosis of Celiac. We also talked some about a GI and that is the next step. He knows he is grasping at straws but I think we both know this trial will not go where is he hoping. Yes, something is causing the hives. And they have gone away since the gluten diet. But it is possible to have Celiac and allergies and we both know that. But she is reacting to oats, wheat and barley and only tests borderline for barley. It was kinda grave in the room as we both have a feeling this just isn't going to stop the end result.

Good thing is that she doesnt' have to go off the diet for now. So another few weeks of peace. 1/2 of me just wants an answer and the other have doesn't want to know. I am worried now about my other children as they too have problems and I am starting to think we might just have found a link.

Thanks everyone for the advise and stories. I really am greatful for all your help.

taweavmo3 Enthusiast

Honestly, it sounds to me like you have an answer. Babies that age should not be anemic if they are absorbing at least half the nutrients from the food that they take in. I don't know WHY doctors think going gluten free and being "labeled" celiac is such a huge ordeal. Once you get used to it, it is really easy. Yes it changes their childhood a bit, but everyone has something they have to deal with. My daughter was also anemic at that age, and I was just told to feed her a more well balanced diet (like I was starving her, sheesh) and give her supplements. I have also been anemic since childhood, and since going gluten free, my hemoglobin has been above 9 for the first time ever. I'm even 5 months preggo now, and haven't had to take a single iron supplement (usually I'm on a double dose at this point).

Anyway, sorry to ramble on! I've also heard my doctor say something about how extreme the gluten free diet is, and how I shouldn't push it on my kids unless they are really sick. He really just didn't have a clue.....all my kids are now on the diet, and all their other problems have cleared up completely. They are healthy as can be....my 3 year old has not had so much as a sniffle this entire winter. And my 6 year old's psoriasis is already clearing up. It's just a healthy lifestyle, not some cruel punishment I'm bestowing on my children.

Good luck with your further testing....I would definately book it to a GI soon to get more answers. If all else fails, just keep her on the diet for a while and see what happens. You're her mother, and you'll know what the right thing to do is for you and your kids. Forget relying so much on the doctors if you keep hitting brick walls, and just go with your instinct and stick to your guns! Take care.

tiffjake Enthusiast
Isn't this supposed to be a sign of Celiac too? I thought I read somewhere that it can be but....geeze....I have read so much it gets lost sometimes!! :P I just got back from my DD's ped last night and they told be that she was boarderline anemic. They are going to let it go as it was just slightly under the norm. But it perked my ears. I have an allergist appointment today and want to know if I need to mention it to him.

I was severely anemic, but I want to add to the other posts that anemia can be a lack of other things besides iron. I have pernicious anemia, which is a chronicly low B12 level. It has nothing to do with iron. And I can't take it with a pill. It has to be a shot or sublingual tablet. AS SOON AS I WENT GLUTEN FREE my "life long anemia" went away. My doc was stunned. Guess that all of the bathroom problems prevented my stomach and intestines from absorbing the B12 in my food. Pernicious anemia (or megaloblastic anemia) is caused by a lack of Intrinsic Factor in the stomack lining that pulls the B12 from the food. But now, somehow, my B12 levels are normal, after eating gluten-free.

Dietcokehead Rookie

Yes! This was my son's first issue that started us toward diagnosis. He was severely anemic with little improvement even with 2 times daily iron supplements.

Guest nini

my daughter was hypoglycemic and amemic at her 3 year "well" check up... she was also underweight and had a distended belly and constant raw rash just like you said, "around her anus"... she also breaks out in hives if she even touches anything with gluten in it (playdough)...

the GI that her ped sent us to REFUSED to consider a celiac dx, even though I had recently been dx'ed with it. The allergy tests he did were negative, he DID NOT do the celiac panel... After consulting with her Ped. I told her that my daughter did sooooo much better when she ate what I was eating (gluten-free) and that when she was at daycare she kept getting sick. So, we put her on a trial of the gluten-free diet, and she improved dramatically in just a few DAYS! Within weeks I had a completely different child.

I say stick with your instinct and keep her gluten-free. It really does get to be second nature, and my daughter eats VERY WELL and is very healthy now. She is in kindergarten and does EXTREMELY well on the diet. She is NOT deprived in any way.

heli Newbie

My daughter also was undiagnosed for 10 years. She was royally ill at 6 years of age and by 16 had given up on sports, school, and the future did not look good. I diagnosed myself, then her. You can have a stool test done for your little one that you order on line and does not require a doctor's permission. I highly recommend the testing - I like knowing what I am dealing with, even though the gluten-free diet seems to have had dramatic affects for your child as it did (does) for mine.

mrsnj91 Explorer

Someone else on here mentioned the stool sample too. I will keep that in mind. It might be the way for us to go since she isn't on gluten. If we end up doing the blood sample and she has to go back on gluten....how long prior to the testing do we have to do that? A few days? A week? A month? Anyone know?

I am actually thinking on having myself and/or my husband and/or my two older children tested 1st. Course I know it won't rule out my youngest but it might help if one of us comes back positive. We are still on gluten. And she has a hard time with her veins. It took us three visits just to get enough blood sample to do the basic 8 allergies!! :( So there is a gluten panel AND a gene test too? I didn't know that. What would the gene test tell you? That you are a carrier?

nini-That is interesting about the hives. I thought hives were an allergic reaction? Is your DD allergic to gluten too? We just had my DD's birthday party about two weeks ago and I gave her a cupcake (that she didn't eat) just for pictures. Snapped the pictures, wiped the tray and her hands and gave her gluten free cookies. She ended up with a nice hive even though I know she didn't eat any. I thought maybe I didn't wipe her hands good enough or maybe someone fed her at the party. I will also keep that in mind. Might explain the hives.

I just wanted to add that I really am greatful for all your help and advise. You all are so great and for someone who is new and seemingly lost in the medical world of tests and appointments it is really great to have people who listen and help!!! Thanks!

Guest nini

the allergy testing they did showed that my daughter was negative for an allergy to wheat, but she still breaks out in hives... my mom said I used to get hives as a child too and when I had food allergy tests done before my celiac dx, I was also negative for the most common food allergens, including wheat. But I had a kinesiologist tell me about 10 years ago that I was allergic to wheat... maybe because the way kinesiology tests it just shows that the body doesn't like something, it can't tell if it's an allergy or an autoimmune reaction.

So, why do we break out in hives from it? I don't know, we just do. I even get a weird rash on my face and upper arms and chest if I've been "glutened"

jenvan Collaborator

Kimberly-

As Nisla insinuated...allergy tests don't always give us the "correct" information. You may want to look into food intolerance testing (IgG) vs food allergy (IgE). Hang in there--your kids are blessed to have a mom who is willing to 'get in the ring' for them!

Archived

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

  • 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 replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

    2. - par18 replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

    3. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

    4. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,340
    • Most Online (within 30 mins)
      7,748

    Abbyyoung417
    Newest Member
    Abbyyoung417
    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
      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
    • par18
      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free condition. I was diagnosed over 20 years ago and have been symptom free only excluding wheat, rye and barley. I tolerate all naturally gluten free whole foods including things like beans which actually helps to form the stools. 
    • trents
      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      @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/
×
×
  • 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.