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No gluten allergy because I don't have classic symptoms of celiac

Edna

By Edna
in Food Intolerance & Leaky Gut

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Edna Newbie
Edna
Posted

I have been dealing with a gluten and lactose allergy for almost a year I have went to two different doctors and the both  said I don't have the allergies because I don't have the "classic symptoms" of celiac disease without doing any testing. The second doctor actually told me that people can't be allergic to milk because it is a sugar which I called him a liar. I am very frustrated that I am going to these doctors and basically be told that I don't have anything wrong with me and making me feel like I am insane. I just don't know where to turn.

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kareng Grand Master
kareng
Posted

Celiac disease is not an allergy.

SLLRunner Enthusiast
SLLRunner
Posted

@Edna, welcome! :)

Bottom line-neither of those doctors know what they are talking about.

First of all, Karen is right-celiac disease is not an allergy, it is an autoimmune disorder which has over 300 symptoms.  Celiac can also be silent, which means a person has no symptoms.  The only way to tell if you have celiac disease is via blood work and an endescope, or if you have dermatitis herpetiformis, a skin condition specific to the disease.

You can have a gluten intolerance, which is different than celiac. You still feel sick from eating gluten but you have none of the intestinal damage.

If you get sick from ingesting lactose, but can eat/drink products without lactose, or eat aged cheeses and some Greek yogurts, chances are you have lactose intolerance.  If you are allergic to dairy, that would mean you have to avoid the casein protein, which is in all milk products. You would get extremely ill from all dairy products. The only way to find this out is to go through allergy testing.

If I were you, I'd look for a good doctor in your area knowledgeable in celiac disease, as well as a good allergist who can test you for food allergies. 

squirmingitch Veteran
squirmingitch
Posted

And DON'T go gluten free until you get tested & that means blood work for celiac as well as endoscopy or else you get false negatives. 

Open Original Shared Link

I quote in part:

Celiac disease affects people differently. There are more than 200 signs and symptoms of celiac disease, yet a significant percentage of people with celiac disease have no symptoms at all. However, people without symptoms are still at risk for some of the complications of celiac disease. 

Symptoms may or may not occur in the digestive system. For example, one person might have diarrhea and abdominal pain, while another person has infertility or anemia. Some people develop celiac disease as children, others as adults.

Dark Angel Rookie
Dark Angel
Posted

You might want to consider seeing a functional medicine physician.  There are many immune pathways and some allergies/sensitivities do not show up on traditional skin or blood testing but one can still be reactive and not have celiac disease. From my understanding, they are more familiar with this presentation of symptoms.  Good luck and hope you find some answers soon.

Edna Newbie
Edna
Posted
  • Author

Kareng I know that celiac is not an allergy.  I do understand the whole celiac vs allergy or intolerance.

Edna Newbie
Edna
Posted
  • Author

Squirmingitch, the problem is they won't do an endoscopy, they did blood work which showed nothing.  A lot of the problem is my thyroid and heart, I am extremely hyperthyroid and have tachycardia so they consider me high risk for procedures.

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kareng Grand Master
kareng
Posted
 

Kareng I know that celiac is not an allergy.  I do understand the whole celiac vs allergy or intolerance.

Sorry.  It sounded like you thought there was such a thing as a " gluten allergy" and it is Celiac.  There are wheat allergies but an allergy is a bit different than an intolerance.  And I don't think there is a lactose allergy.  I think it's an allergy to casein, a protein in milk.  Lactose intolerance is rough and has a lot of the same symptoms as Celiac but is caused by  an inability to make the enzyme that digests the lactose.

squirmingitch Veteran
squirmingitch
Posted
 

Squirmingitch, the problem is they won't do an endoscopy, they did blood work which showed nothing.  A lot of the problem is my thyroid and heart, I am extremely hyperthyroid and have tachycardia so they consider me high risk for procedures.

Edna, can you get or do you already have a copy of the blood work they did for celiac & post it here? They may not have done the full panel and heaven knows they've been known to misread it.

StephanieL Enthusiast
StephanieL
Posted

Lactose intolerance and an allergy to DAIRY are two VERY different things. The Dr. is right- you can't have an allergy to lactose which is a sugar. You can be intolerant though. A dairy allergy involves things like hive, GI issues, breathing difficulty and other issues. 

  • 2 weeks later...
frieze Community Regular
frieze
Posted

after you get yourself squared away, these docs need reporting.  out right lying to you...

Fendell Newbie
Fendell
Posted

I've been strictly gluten free for four years. Three years I went off other grains such as rice which tested very high . I have one of the genes. My mother has Celiac and I had an endoscopy for reflux and the took biopsies and Doctor said " You Do Not Have Celiac" . This is the office that said just eat a cracker before the endoscopy and it will show up if you have it. I did not eat that one cracker LOL  I don't have "typical" celiac symptoms and have tested positive for multiple food sensitivities. Having those tests done helped enormously. One   one accidental exposure last fall which gave me my first case of Dermatitis Herpetiformis which left scars )  does indicate Celiac . I'm really rattled because endoscopy for reflux said I have reflux and chronic gastritis ( and I did not know that already?) I've done so much research I have books ! and watched my mother suffer so much and this just flies in my face. So you need to trust your gut most of all( or your symptoms)  I honestly did not expect him to find anything at all but to be told with absolute certainty I do not have celiac and don't need to worry  feels nutty to me .   Next time I get the rash( I hope I don't) I will get a biopsy . 
"Dermatitis herpetiformis, also known as DH and Duhring’s disease, is a skin manifestation of celiac disease. Extremely itchy bumps or blisters appear on both sides of the body, most often on the forearms near the elbows, as well as on knees and buttocks"

Fendell Newbie
Fendell
Posted

Dairy and eggs are out as well

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      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
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