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

What Kind Of Doctor


3littlebears

Recommended Posts

3littlebears Newbie

I am interested in having my son (age 4) tested for celiac. We took him off of gluten about 3 months ago for behavior problems at school. They wanted to put him on drugs, but I was desperate to try anything and had read about gluten free diets. The reason I want to have him tested for celiac is that he within days of going on the diet he became an almost perfect child at school,and less hyper at home. This is a kid that had gotten three spankings at school in the first week of classes. We tried letting him eat what he wanted on Friday nights, but we noticed that he would always break out in a rash that looks like chicken pox afterwards. He has always had skin, stomach, bowel problems. He was breastfed and if I ate anything from a cow his stomach was messed up. I though he had allergies, but we went through a whole round of allergy testing 2 years ago and he didn't show any food allergies at all. The allergy clinic thought he might have reflux.

My problem is that I don't know what kind of doctor to take him too. We live in a small very rural part of southern OK. They don't have any celiac specialists that I can find. Can a regular doctor do the test for this?


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



Celiac.com Sponsor (A8-M):



Mother of Jibril Enthusiast

Welcome to the group! :)

A regular doctor can do the celiac panel... it's just a blood test. The problem is that false negatives are pretty common, especially in small children. Also, even if you have the "celiac genes" and a positive response to the diet, you're unlikely to get a positive result once you've been gluten-free for three months.

My son has a problem with casein (cow's milk) too. And corn. I've never had him tested, but there's no way I'm going to let him eat these foods again until he can take some responsibility for his own health. I'm sure your son knows when he feels "icky," but he's probably too young to understand the long-term consequences of autoimmune disorders.

It makes me sad to think of your son being spanked at school for a problem he can't control. Why not just keep him off gluten and dairy? Human beings can be perfectly healthy without these foods.

Whether your son is ever diagnosed with celiac disease or not, this is a great place to learn more about the gluten-free diet.

ps - Food allergies and food intolerances are not the same thing. I don't have ANY food allergies, but I'm intolerant to gluten and corn. Some unlucky people have allergies and intolerances to the same foods, which really causes a bad reaction!

Happy Holly Apprentice

I am so sorry your son is having problems. I can relate. I had symptoms since I was very young, but was not diagnosed until I was 42 years old. Who knows how much damage has been done to my digestive system.

It sounds to me like your son also has the skin disease which is related to celiac sprue. The skin rash is called, "dermititus herpetiformis" If you do a search, you can find out a lot about DH. I do believe a dermatologist can take a skin sample and test it for DH. If your son does have DH, then it is definate that he also has celiac sprue. One does not have DH without also having DH.

It's kind of a round-about way to finding celiac sprue, but it works.

I am interested in having my son (age 4) tested for celiac. We took him off of gluten about 3 months ago for behavior problems at school. They wanted to put him on drugs, but I was desperate to try anything and had read about gluten free diets. The reason I want to have him tested for celiac is that he within days of going on the diet he became an almost perfect child at school,and less hyper at home. This is a kid that had gotten three spankings at school in the first week of classes. We tried letting him eat what he wanted on Friday nights, but we noticed that he would always break out in a rash that looks like chicken pox afterwards. He has always had skin, stomach, bowel problems. He was breastfed and if I ate anything from a cow his stomach was messed up. I though he had allergies, but we went through a whole round of allergy testing 2 years ago and he didn't show any food allergies at all. The allergy clinic thought he might have reflux.

My problem is that I don't know what kind of doctor to take him too. We live in a small very rural part of southern OK. They don't have any celiac specialists that I can find. Can a regular doctor do the test for this?

Corgi-Fan Newbie

You may be surprised to hear this, but I was diagnosed by a chiropractor who specializes in kinesiology (muscle testing). I had suffered for years with chronic fatigue, intense pain in my small intestine, and diarrhea when a friend told me about Dr. Koch of Elm Grove Wisconsin. I went to see him, not sure what to expect, but he checked me for many toxins and allergens when he told me I was wheat intolerant. I was so desperate that I was willing to try anything so I eliminated grains right away. The next day I had a headache that words cannot describe but by the next day I noticed a dramatic change in my energy level. The diarrhea was gone for the first time in years and the pain gradually left my gut over the next few weeks. Now it's 6 months later and I feel normal again! Dr. Koch also uncovered mercury toxins, and parasites. we're just cleaning things up as we find them. But I tell you this so you will know that there are alternatives to western medicine that can be much more helpful than the conventional approach. If you live anywhere near Milwaukee I would invite you to check out Dr. Koch. He is amazing and he changed my life!

  • 2 years later...
Melissa B. Newbie

Wow! What is the Dr. Koch's first name of the chiro you saw in Elm Grove?

cahill Collaborator

After I replied I realized that this is a very old thread

sreese68 Enthusiast

***Oops! Just saw above me that this is an old thread! Sorry!!**

If you suspect his rash is DH, you could schedule an appointment with a dermatologist. Then have your son eat gluten right before the appointment, so his rash will show up and it can get biopsied. That way, he'd only have to eat it a time or two instead of the 3 months it takes for a blood test. Search the forums here for the correct way for a biopsy to be done as it seems many dermatologists aren't aware of where to take the biopsy.

Good luck!


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



Celiac.com Sponsor (A8-M):



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. - Clear2me replied to Clear2me's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Gluten free nuts

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

      Blood tests low iGA 4 years later digestive issues

    3. - Aretaeus Cappadocia replied to Clear2me's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Gluten free nuts

    4. - trents replied to Larzipan's topic in Related Issues & Disorders
      42

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,388
    • Most Online (within 30 mins)
      7,748

    Whirlwind acres
    Newest Member
    Whirlwind acres
    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

    • Clear2me
      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
      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
    • Aretaeus Cappadocia
      I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to see if they can get you the gluten-free version (they are tasty) > This past week I bought "Sliced Raw Almonds, Baking Nuts, 5 lbs Item 1495072 Best if used by Jun-10-26 W-261-6-L1A 12:47" at Costco. The package has the standard warning that it was made on machinery that <may> have processed wheat. Based on that alone, I would not eat these. However, I contacted customer service and asked them "are Costco's Sliced Almonds gluten free?" Within a day I got this response:  "This is [xyz] with the Costco Member Service Resolutions Team. I am happy to let you know we got a reply back from our Kirkland Signature team. Here is their response:  This item does not have a risk of cross contamination with gluten, barley or rye." Based on this, I will eat them. Based on experience, I believe they will be fine. Sometimes, for other products, the answer has been "they really do have cross-contamination risk" (eg, Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs Item 1195303). When they give me that answer I return them for cash. You might reasonably ask, "Why would Costco use that label if they actually are safe?" I can't speak for Costco but I've worked in Corporate America and I've seen this kind of thing first hand and up close. (1) This kind of regulatory label represents risk/cost to the company. What if they are mistaken? In one direction, the cost is loss of maybe 1% of sales (if celiacs don't buy when they would have). In the other direction, the risk is reputational damage and open-ended litigation (bad reviews and celiacs suing them). Expect them to play it safe. (2) There is a team tasked with getting each product out to market quickly and cheaply, and there is also a committee tasked with reviewing the packaging before it is released. If the team chooses the simplest, safest, pre-approved label, this becomes a quick check box. On the other hand, if they choose something else, it has to be carefully scrutinized through a long process. It's more efficient for the team to say there <could> be risk. (3) There is probably some plug and play in production. Some lots of the very same product could be made in a safe facility while others are made in an unsafe facility. Uniform packaging (saying there is risk) for all packages regardless of gluten risk is easier, cheaper, and safer (for Costco). Everything I wrote here is about my Costco experience, but the principles will be true at other vendors, particularly if they have extensive quality control infrastructure. The first hurdle of gluten-free diet is to remove/replace all the labeled gluten ingredients. The second, more difficult hurdle is to remove/replace all the hidden gluten. Each of us have to assess gray zones and make judgement calls knowing there is a penalty for being wrong. One penalty would be getting glutened but the other penalty could be eating an unnecessarily boring or malnourishing diet.
    • trents
      Thanks for the thoughtful reply and links, Wheatwacked. Definitely some food for thought. However, I would point out that your linked articles refer to gliadin in human breast milk, not cow's milk. And although it might seem reasonable to conclude it would work the same way in cows, that is not necessarily the case. Studies seem to indicate otherwise. Studies also indicate the amount of gliadin in human breast milk is miniscule and unlikely to cause reactions:  https://www.glutenfreewatchdog.org/news/gluten-peptides-in-human-breast-milk-implications-for-cows-milk/ I would also point out that Dr. Peter Osborne's doctorate is in chiropractic medicine, though he also has studied and, I believe, holds some sort of certifications in nutritional science. To put it plainly, he is considered by many qualified medical and nutritional professionals to be on the fringe of quackery. But he has a dedicated and rabid following, nonetheless.
    • Scott Adams
      I'd be very cautious about accepting these claims without robust evidence. The hypothesis requires a chain of biologically unlikely events: Gluten/gliadin survives the cow's rumen and entire digestive system intact. It is then absorbed whole into the cow's bloodstream. It bypasses the cow's immune system and liver. It is then secreted, still intact and immunogenic, into the milk. The cow's digestive system is designed to break down proteins, not transfer them whole into milk. This is not a recognized pathway in veterinary science. The provided backup shifts from cow's milk to human breastmilk, which is a classic bait-and-switch. While the transfer of food proteins in human breastmilk is a valid area of study, it doesn't validate the initial claim about commercial dairy. The use of a Dr. Osborne video is a major red flag. His entire platform is based on the idea that all grains are toxic, a view that far exceeds the established science on Celiac Disease and non-celiac gluten sensitivity. Extraordinary claims require extraordinary evidence, and a YouTube video from a known ideological source is not that evidence."  
×
×
  • 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.