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

New Here, Need Advice On Symptoms

rose810

Recommended Posts

rose810 Newbie
rose810
Posted

Hi. I used to be a healthy, energetic person up until almost two years ago and was wondering if my symptoms might be related to celiac? I started having almost daily migraines following a sinus infection in October 2005 when my son was 4 months old. Then after Christmas 2006 my teeth and gums have been hurting every day and I have seen my dentist twice about this so it's not a dental problem. I am constantly tired and have no energy. Lastly, my appetite has also increased and I eat at least 8 times a day which is really frustrating. I have tried to modify my diet to eat more fiber (lots of Kashi cereal) to fill me up but that doesn't seem to work.

I have not been able to identify the majority of the migraine triggers, but I do know that if I do not eat in time I will get one. Over time, the length of time that I have to eat once I get hungry to the time the migraine starts has decreased to the point of being ridiculous. Now I have anywhere from 5-10 minutes to eat, which means I'm always taking sandwiches with me wherever I go.

I have seen several doctors for the tooth pain and nobody can figure it out. Some seem to not believe me. I did get the blood test for celiac done and it came back negative. Do my symptoms sound like celiac? I know from reading some other posts that the blood tests sometimes can be wrong. Thanks in advance.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

With your symptoms starting after the birth of your child and an infection it is possible.

There are a couple ways to find out other than the blood work. You could check out Enterolab, they do fecal and gene testing. They can't diagnose you celiac but they can tell you if you are forming antibodies to gluten, casein and other foods.

You could also do a dietary exclusion and, if needed, a challenge. The best way to do that is by eating whole, unprocessed naturally gluten free foods for a couple of months. If you have doubt you could then challenge.

  • 2 weeks later...
Guest andie
Guest andie
Posted
Hi. I used to be a healthy, energetic person up until almost two years ago and was wondering if my symptoms might be related to celiac? I started having almost daily migraines following a sinus infection in October 2005 when my son was 4 months old. Then after Christmas 2006 my teeth and gums have been hurting every day and I have seen my dentist twice about this so it's not a dental problem. I am constantly tired and have no energy. Lastly, my appetite has also increased and I eat at least 8 times a day which is really frustrating. I have tried to modify my diet to eat more fiber (lots of Kashi cereal) to fill me up but that doesn't seem to work.

I have not been able to identify the majority of the migraine triggers, but I do know that if I do not eat in time I will get one. Over time, the length of time that I have to eat once I get hungry to the time the migraine starts has decreased to the point of being ridiculous. Now I have anywhere from 5-10 minutes to eat, which means I'm always taking sandwiches with me wherever I go.

I have seen several doctors for the tooth pain and nobody can figure it out. Some seem to not believe me. I did get the blood test for celiac done and it came back negative. Do my symptoms sound like celiac? I know from reading some other posts that the blood tests sometimes can be wrong. Thanks in advance.

Hi

I started the gluten free diet for my 10 year old son for a variety of reasons, but the final straw was when he started getting headaches. He has unexplained anemia, low B12, low folate. We were told he had a malabsorption syndrome when he was 2. Negative blood results for celiac when he was 8.

My husband has suffered migraine headaches for years. He has a variety of other health issues as well. He had gotten to the point where he slept at least 16 hours/day. No energy. He and my son went through a supersized bottle of tums a month.

Since going gluten free neither have touched a tums or had a headache. Not even a twinge! My husbands psorasis is virtually gone. He comes home from work, cuts wood, cuts the grass etc. etc.

until bed at about 11pm. His mood has altered to being able to sustain cohabitation with other living beings. My son borders on hyperactivity. (Maybe I'll introduce just a little gluten back in the diet. Ha! Ha!)

My point being that although some of the symptoms are standard, there are many variations to this theme. After reading many entries here the symptoms of celiac seem to attack the weakest point of each individual. My husband and sons symptoms vary like milk and cheese. The source is the same but they are two completely different things.

Put yourself on the diet. It will not be so easy with small children because that is a full time job in itself. There is more cooking involved. More shopping time. More research time. But if it makes you feel better (and you'll know it when you feel it!) then you will have more energy to spend on the kids, less pain and answers to your questions. If it works for you, start the kids off early. Don't wait until they show symptoms. My son has gone 10 years without an answer and now his body is not playing catch up anymore. I wish I had thought of this earlier. It may have saved him alot of grief.

The literature suggests the diet for up to 18 months.

Good luck

Andie

gfpaperdoll Rookie
gfpaperdoll
Posted

Andie, I am not sure what you are talking about when you say "the literature suggests the diet for 18 months". It is a LIFELONG diet, you never can ever eat gluten again & for some of us dairy. Your insides might heal in 18 months, but if you eat gluten again, they will get damaged again & also worse things might happen like getting cancer or another auto immune illness. Not a pretty picture...

cyberprof Enthusiast
cyberprof
Posted
Andie, I am not sure what you are talking about when you say "the literature suggests the diet for 18 months". It is a LIFELONG diet, you never can ever eat gluten again & for some of us dairy. Your insides might heal in 18 months, but if you eat gluten again, they will get damaged again & also worse things might happen like getting cancer or another auto immune illness. Not a pretty picture...

Gfpaperdoll, I think she means that it may take 18 months to feel better or "normal" on the gluten-free diet.

OP, I get tooth pain from sinus headaches/sinus infections. All the rest of your symptoms could be celiac.

Try eliminating gluten and see if it helps.

Guest andie
Guest andie
Posted
Andie, I am not sure what you are talking about when you say "the literature suggests the diet for 18 months". It is a LIFELONG diet, you never can ever eat gluten again & for some of us dairy. Your insides might heal in 18 months, but if you eat gluten again, they will get damaged again & also worse things might happen like getting cancer or another auto immune illness. Not a pretty picture...

Hi

Sorry I'm not making myself clear enough. Thanks for pointing this out. I shudder to think someone might think 18 months leads to a life long cure.

What I meant was that it can take up to 18 months for whatever symptoms to disappear and a difference in the way you feel noted. If after 18 months no improvement has been noted, then it is not celiac disease. The first weeks we were on the diet seemed like a waste of time, but at 2 months there was almost daily improvement.

I will point out that my sons symptoms were vague and if not for the dangerously low iron levels with no answers from Doctors I would never have started it in the first place. My husband suffers from an autoimmune disease and since I put my son on it I got him to try it too.

The biggest difference is in my husband. Because iron is so hard to absorb we are pending on blood work to see if there is a difference in my son. However I have recently heard him tell his friends 'I can't have that!'. If you knew my son, that speaks volumes in itself.

Hope this clears things up!

Andie

Archived

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

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


  • Member Statistics

    • Total Members
      132,398
    • Most Online (within 30 mins)
      7,748
    Megannnnn
    Newest Member
    Megannnnn
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Scott Adams
      Coeliac UK Research Conference 2025

      By Scott Adams · Posted

      Thanks for sharing this!
    • Scott Adams
      Shingles - Could It Be Related to Gluten/ Celiac

      By Scott Adams · Posted

      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
      Blood tests low iGA 4 years later digestive issues

      By trents · Posted

      Keep us posted.
    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
    • Mmoc
      Blood tests low iGA 4 years later digestive issues

      By Mmoc · Posted

      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
×
×
  • 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.