Diagnosis issues

[AmandaLynn]

Hello everyone. I'm new here. Back in October I started having symptoms of Celiac disease. I got 2 blood tests one indicated Celiac disease & the indicated that I had the celiac gene. My primary doctor said I had it back in Januaryabs told me to go on a gluten-free diet. He then referred me to a gastro doctor who I was finally able to see yesterday. She said it's likely I have it but can't officially diagnose me until I go back on gluten for 6 to 8 weeks then do the intestinal biopsy. I told her I'd rather not since my symptoms were bad at the end of last year & that they have improved. She said that's understandable. Has anyone experienced this where one doctor gives you the diagnosis then the gastro doctor can't officially diagnosis you?? I really don't want to do the gluten challenge because the end of the year was the worst experience I've ever had & it lasted months. I don't know what I should do. Seeking advice.

[GlutenbusterMama]

  On 3/8/2023 at 12:48 AM, AmandaLynn said:

Hello everyone. I'm new here. Back in October I started having symptoms of Celiac disease. I got 2 blood tests one indicated Celiac disease & the indicated that I had the celiac gene. My primary doctor said I had it back in Januaryabs told me to go on a gluten-free diet. He then referred me to a gastro doctor who I was finally able to see yesterday. She said it's likely I have it but can't officially diagnose me until I go back on gluten for 6 to 8 weeks then do the intestinal biopsy. I told her I'd rather not since my symptoms were bad at the end of last year & that they have improved. She said that's understandable. Has anyone experienced this where one doctor gives you the diagnosis then the gastro doctor can't officially diagnosis you?? I really don't want to do the gluten challenge because the end of the year was the worst experience I've ever had & it lasted months. I don't know what I should do. Seeking advice.

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Hi! Just like you, the doctors told us that celiac disease could not be "officially" diagnosed for our son without the biopsy even though his blood tests also indicated it was celiac's. I felt awful making my son eat gluten when we knew it was the culprit. They said he only had to have a small amount of gluten each day for it to show up in the biopsy. Then when they did the biopsy, his results came back normal...no indication of celiac's disease! After putting him through all that, it wasn't until finding out my husband had the celiac gene along with the blood test results did they finally decide to diagnose him celiac's. 

[Scott Adams]

If you had a positive blood test and bad symptoms that went away on a gluten-free diet this should be confirmation enough. It’s your call if you need an official piece of paper that says celiac disease on it (which could make private health and life insurance more expensive).

[Beverage]

Try a different doc. I was diagnosed by a naturopathic MD based on 3 things :  high positive blood test, DNA test, response to gluten free diet. I have a letter from him with that diagnosis. 

[RMJ]

I was not able to get an endoscopy and biopsy when my antibody levels first showed celiac disease.  My doctor put “abnormal celiac antibody panel” as my diagnosis. I eventually did get an endoscopy and even after 4 years trying to be gluten free there was some damage and I got the official celiac disease diagnosis.

[SandyV]

  On 3/15/2023 at 12:13 AM, RMJ said:

I was not able to get an endoscopy and biopsy when my antibody levels first showed celiac disease.  My doctor put “abnormal celiac antibody panel” as my diagnosis. I eventually did get an endoscopy and even after 4 years trying to be gluten free there was some damage and I got the official celiac disease diagnosis.

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Unfortunately, I suffer now with severe gum disease and eyesight issues. I had a biopsy 18 years ago and immediately changed my diet. At that time, I had no idea that gluten also was found in topical products. My hair started falling out because the shampoo I was using contained gluten. Lip balms, dental products, etc., contain gluten as well. The most difficult thing I have faced is that our medical community is widely ignorant of Celiac Disease. I wish you nothing but the best.

[Jane smith]

  On 3/8/2023 at 12:48 AM, AmandaLynn said:

Hello everyone. I'm new here. Back in October I started having symptoms of Celiac disease. I got 2 blood tests one indicated Celiac disease & the indicated that I had the celiac gene. My primary doctor said I had it back in Januaryabs told me to go on a gluten-free diet. He then referred me to a gastro doctor who I was finally able to see yesterday. She said it's likely I have it but can't officially diagnose me until I go back on gluten for 6 to 8 weeks then do the intestinal biopsy. I told her I'd rather not since my symptoms were bad at the end of last year & that they have improved. She said that's understandable. Has anyone experienced this where one doctor gives you the diagnosis then the gastro doctor can't officially diagnosis you?? I really don't want to do the gluten challenge because the end of the year was the worst experience I've ever had & it lasted months. I don't know what I should do. Seeking advice.

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[Jane smith]

I think you should get a second opinion. Maybe it’s IBS or just a food allergy. I was first diagnosed with IBS and going on that missed diagnosis really hurt my gut. Horrible horrible diarrhea, cramps headaches, and it delayed my healing. It could take up to a yr. before you’re bk to normal, as normal as celiac ppl can be. Try to maintain your stress levels. Hope I helped

[Grateful]

  On 3/8/2023 at 2:37 AM, GlutenbusterMama said:

Hi! Just like you, the doctors told us that celiac disease could not be "officially" diagnosed for our son without the biopsy even though his blood tests also indicated it was celiac's. I felt awful making my son eat gluten when we knew it was the culprit. They said he only had to have a small amount of gluten each day for it to show up in the biopsy. Then when they did the biopsy, his results came back normal...no indication of celiac's disease! After putting him through all that, it wasn't until finding out my husband had the celiac gene along with the blood test results did they finally decide to diagnose him celiac's. 

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When in recovery from Endoscopy procedure, my GI Dr. said it was Celiac, which explained my weight loss, skin rashes, etc. However, the biopsy came back as normal.  The biopsy used to be the gold standard for celiac diagnosis, but you had to be eating gluten for at least 6 months. Since Celiac is genetic, I then did a DNA Gluten Sensitivity test which tested 4 different alleles, done by mouth swabs in 4 different areas of the mouth. Since it’s DNA, you don’t need to be eating gluten. I tested positive for all 4 alleles in the genes that, when triggered, lead to Celiac. Because I tested positive in all 4, each of my parents carried the genes, and my children would have at least one of the genes. This was important for me to know and encourage them to get the DNA Test, and protect their health in the future. My Dr.’s verbal diagnosis, my many symptoms, and the DNA test results convinced me that a strict gluten free diet was a must !

[Wheatwacked]

  On 3/15/2023 at 4:41 AM, Jane smith said:

Has anyone experienced this where one doctor gives you the diagnosis then the gastro doctor can't officially diagnosis you??

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As you read through the posts and articles here on Celiac.com you will see many variations of this. There is an overwhelming cultural and financial investment that gluten is a god given necessity. Catholics with Celiac Disease have to choose between salvation and gluten. If you avoid gluten you won't have Celiac Disease; similar to how if you don't ingest mercury you won't have heavy metal poisoning; but gluten is added to most processed foods and beauty products and places where "who'd a thunk?"

Many doctors believe that it is more beneficial to avoid the restrictive gluten free diet to avoid nutrition deficits, but other than carbohydrates most of the wheat we consume has minimal nutrient value except for those added to it by government fortification programs.

[Wheatwacked]

  On 3/15/2023 at 12:33 PM, Grateful said:

My Dr.’s verbal diagnosis, my many symptoms, and the DNA test results convinced me that a strict gluten free diet was a must !

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Good Choice! Fill the coffers of Agribussiness and Big Pharma or be healthy.

Many of the symptoms associated with Celiac Disease are caused by malnutrition caused by malabsorbtion caused by the autoimmune effect of gluten on the small intestine villi.

Autoimmune Diseases are out of control because as a population we don't ever fill our vitamin D needs due to fear of skin cancer and fatty foods.

Dietary fat increases vitamin D-3 absorption Conclusions: The presence of fat in a meal with which a vitamin D-3 supplement is taken significantly enhances absorption of the supplement

Vitamin D and the development of allergic disease: how important is it? Vitamin D deficiency is prevalent worldwide and may partly explain the increases in asthma and allergic diseases that have occurred over the last 50–60 years.  Vitamin D may be an important environmental factor. Evolutionarily, early humans evolved in sun-rich environments and the increased efficiency of vitamin D production in the skin is thought to be a major driving factor in human skin depigmentation as humans migrated away from the equatorial areas. Bosse et al. have shown in vitro that vitamin D increases glucocorticoid bioavailability in bronchial smooth muscle cells suggesting a further beneficial role for vitamin D in the prevention and treatment of asthma. 

[trents]

I would like to add that there is a certain small percentage of celiacs whose manifestation of the disease is epidermal (DH) without flattening of the villi.

Edited March 15, 2023 by trents