Negative biopsy and gene tests but all else indicates coeliac - what to do?

[bvfl]

TLDR; since 2019 I have tested positive for coeliac in blood work on two seperate occasions, following stomach issues and fatigue, and tested positive for gluten sensitivity through a hair test. However, both my gene text and bioscopy results do not support that I am coeliac. I’m really confused about what to do after seeing 4 different doctors trying to find the answer.
 

Full history; With regards to symptoms, I used to eat a lot of gluten and was fine up until 2018/19, when I lost a lot of weight and was constantly headachey, cold, tired and depressed. These symptoms didn’t seem strictly linked to gluten though. Continued to eat gluten after doctor gave me the all clear due to gene test; travelled overseas, ate a lot of baguettes and croissants in France, ended up hospitalised for constipation (lol?!). Continued to travel, caught a bug (I think) and ended up alternating between diarrhoea and constipation for another couple months. Stomach only settled once I got back home. 

Went to new doctor again last year to follow up on gas, bloating, and IBS like symptoms. Celiac blood test came back positive again. She sent me straight to a gastroenterologist who did an endoscopy that came back negative. In the meantime, symptoms seemed to settle which made me think I had made everything up.

This year, went to see a naturopath for an unrelated issue (hormonal acne). He ran a hair test which came back positive for gluten sensitivity and dysbiosis (stomach imbalance). Not sure how much I believe the guy but I was willing to try anything to clear my skin, so cut gluten immediately, although wasn’t too strict on trace level stuff like soy sauce etc as I don’t seem to react to it. Skin improved a lot within two weeks. Lapsed and ate some baked goods full of gluten a couple times and was bedridden for both days following. 
 

I get that gluten is obviously bad for me and I feel a lot better not eating it. It’s not a question of cutting it out, which I definitely will do. But my life would be a lot easier if I knew, from time to time, that I could have a bit of soy sauce or a small piece of cake for a birthday or something without literally shortening my lifespan. So I’m not sure whether to treat this is a NCGS or full coeliac. My half-brother is intolerant to pretty much every food under the sun so food sensitivities may run in the family. Am I coeliac or not? Any pointers about what to to do next? 

 

 

[trents]

2 hours ago, bvfl said:

TLDR; since 2019 I have tested positive for coeliac in blood work on two seperate occasions, following stomach issues and fatigue, and tested positive for gluten sensitivity through a hair test. However, both my gene text and bioscopy results do not support that I am coeliac. I’m really confused about what to do after seeing 4 different doctors trying to find the answer.
 

Full history; With regards to symptoms, I used to eat a lot of gluten and was fine up until 2018/19, when I lost a lot of weight and was constantly headachey, cold, tired and depressed. These symptoms didn’t seem strictly linked to gluten though. Continued to eat gluten after doctor gave me the all clear due to gene test; travelled overseas, ate a lot of baguettes and croissants in France, ended up hospitalised for constipation (lol?!). Continued to travel, caught a bug (I think) and ended up alternating between diarrhoea and constipation for another couple months. Stomach only settled once I got back home. 

Went to new doctor again last year to follow up on gas, bloating, and IBS like symptoms. Celiac blood test came back positive again. She sent me straight to a gastroenterologist who did an endoscopy that came back negative. In the meantime, symptoms seemed to settle which made me think I had made everything up.

This year, went to see a naturopath for an unrelated issue (hormonal acne). He ran a hair test which came back positive for gluten sensitivity and dysbiosis (stomach imbalance). Not sure how much I believe the guy but I was willing to try anything to clear my skin, so cut gluten immediately, although wasn’t too strict on trace level stuff like soy sauce etc as I don’t seem to react to it. Skin improved a lot within two weeks. Lapsed and ate some baked goods full of gluten a couple times and was bedridden for both days following. 
 

I get that gluten is obviously bad for me and I feel a lot better not eating it. It’s not a question of cutting it out, which I definitely will do. But my life would be a lot easier if I knew, from time to time, that I could have a bit of soy sauce or a small piece of cake for a birthday or something without literally shortening my lifespan. So I’m not sure whether to treat this is a NCGS or full coeliac. My half-brother is intolerant to pretty much every food under the sun so food sensitivities may run in the family. Am I coeliac or not? Any pointers about what to to do next? 

 

 

First, can you be more specific about what blood tests were run that turned up positive for celiac? Do you have access to those records online or a hard copy. Can you post the results along with reference ranges? This might help you understand what I'm looking for: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/.

The tTG-IGA is the most important one.

Second, we are still learning about the genetics of celiac disease. There are probably more genes involved than was originally thought (D2Q and DQ8). We are getting other reports like yours of people testing positive for celiac disease without those genes.

Third, I would not classify soy sauce as having a "trace level" of gluten. It is the second ingredient on the label. "Trace levels" would refer to cross contamination scenarios, not the intentional inclusion of wheat in a food product. You also need to realize that just because you did not have noticeable symptoms when eating smaller amounts of gluten does not mean no inflammation was occurring in the small bowel lining. If you have celiac disease. the surest way to prevent healing of the small bowel villi is the cheat on the gluten-free diet like that.

Fourth, have you had your "hormonal acne" biopsied? Could it be dermatitis herpetiformis? The only known cause for DH is celiac disease.

Fifth, some people who actually do have celiac disease have negative biopsies. You are not the only one who has reported this phenomenon. Sometimes the villi damage is patchy and missed by the one doing the biopsy, especially if then don't know enough to take samples from several different areas of the small bowel.

[Laura Renee]

Hello,

I have been gluten free for 30 years but, have been staying gluten free for the past 12 years. My tests came back positive and I did not do a biopsy. My 3 sisters have been diagnosed with it as well, however none of them follow the diet. Only one of the girls tests came back negative and she had the exact same reactions as you have had.. since it was "negative" she didn't want to continue being gluten-free. 

The oldest sibling (67) was colonoscopy tested celiac, and she stayed gluten-free for 10 years but now doesn't follow the diet. She was also diagnosed with stomach cancer, had it removed and still has issues because of lack of interest to stay on the diet. 

Every single one of us gets very sick after eating or unknowingly eating gluten. With how you are explaining your symptoms I believe that you are having a "false negative" regarding celiac. My advise is to stay gluten-free, manage your diet because if not there are a plethora of serious affects from continuing to consume gluten. Be as diligent as you can because it's not worth the risks of the other conditions that it may cause. 

I've done a ton of research and even on this site at the menu, you are able to see the many things a gluten allergy can do to the body. It affects sinus, stomach, nerves, muscles, reproductive issues or miscarriages. Plus I haven't mentioned the bones or "feelings" depression, anxiety, suicidal thoughts... to name just a handful. Then, there is cancer. Yep. Cancer. 

Stay off of gluten! Celiac website has tons of information on what things are gluten free. The soy sauce concern is an easy fix. There are amazing gluten-free soy sauces!

Check more into the front page and Navigate to "Foods containing gluten or Foods to avoid" it. Plus, medication is another thing to check on this website. If it doesn't say it, then research the company. 

I am fairly sensitive but I have found that trial and error is hard but necessary sometimes! 

Good luck! 

Laura Rynee ❤️

[trents]

23 minutes ago, Laura Renee said:

"I have been gluten free for 30 years but, have been staying gluten free for the past 12 years. "

23 minutes ago, Laura Renee said:

"I've done a ton of research and even on this site at the menu, you are able to see the many things a gluten allergy can do to the body."

 ❤️

 

 

 

 

Laura Renee, do you mean it's only for the last 12 years you have been consistent with the gluten free diet?

Do you speak of NCGS or celiac disease when you use the term allergy? Celiac disease is an autoimmune disorder, not an allergy. Don't mean to be picky but we are constantly battling that misconception in the public sector.

Edited April 3, 2022 by trents

[Wheatwacked]

4 hours ago, bvfl said:

Skin improved a lot within two weeks. Lapsed and ate some baked goods full of gluten a couple times and was bedridden for both days following. 

Tamari Sauce is 100% fermented soy; Soy Sauce has more wheat than soy.

Quote

Interestingly, our review shows a remarkable prevalence of familiar history of coeliac disease, malabsorption signs and autoimmune disorders among NCGS patients. As such, the suspicion of misclassification of a subset of coeliac patients as having NCGS is present once again.    Systematic review: noncoeliac gluten sensitivity

Celiac Disease and Vitamin D Deficiency

Possible Role of Vitamin D in Celiac Disease Onset

[Laura Renee]

Hello-

Honestly, I'm not sure who I'm actually responding to..about Celiac vs Gluten sensitivity. 

I am aware that Celiac is an auto immune disorder. HOWEVER, What I've experienced when discussing the "Autoimmune Disorder" It's easier to explain the effects of what is does to my body..  I say an "allergic reaction".because Gluten/The/Barley triggers a response LIKE an allergy. The affects are as if I am having an allergic reaction. My doctor's have said to me allergy and I've had all the IGA TTG tests to indicate celiac ..We did a test and I still tested positive, on a gluten free diet. 

I have on going issues..dairy allergy. Lactose intolerance. I continue to have low Vitamin D. Therefore, I take 10,000 daily just to stay above 70. 

Celiac Symptoms:

1.The signs and symptoms of celiac disease can vary greatly and differ in children and adults. Digestive signs and symptoms for adults include:

-Diarrhea

-Fatigue

-Weight loss/in some cases weight gain.. unhealthy eating 

-Bloating and gas

-Abdominal pain

-Nausea and vomiting

-Constipation

However, more than half the adults with celiac disease have signs and symptoms unrelated to the digestive system, including:

-Anemia, usually from iron deficiency

-Loss of bone density (osteoporosis) or softening of bone (osteomalacia)

-Itchy, blistery skin rash (dermatitis herpetiformis)---(for me it is also on the back of my arms, little spotty hard bumps. I have to use all natural bath soap and lotions.)

-Mouth ulcers-

-Headaches and fatigue

-Nervous system injury, including numbness and tingling in the feet and hands, possible problems with balance, and cognitive impairment

-Joint pain

-Reduced functioning of the spleen (hyposplenism)

-Pale, foul-smelling stools

 

B. The inability to absorb nutrients might result in:

-Failure to thrive for infants

-Damage to tooth enamel

-Weight loss

-Anemia

-Irritability

-Short stature

-Delayed puberty

 

C. Neurological symptoms, including

-attention-deficit/hyperactivity disorder (ADHD)

-learning disabilities

 -headaches

-lack of muscle coordination and seizures

 

 D. Complications

-Untreated, celiac disease can cause:. This occurs if your small intestine can't absorb enough nutrients. Malnutrition can lead to anemia and weight loss. In children, malnutrition can cause slow growth and short stature.

-Bone weakening. Malabsorption of calcium and vitamin D can lead to a softening of the bone (osteomalacia or rickets) in children and a loss of bone density (osteopenia or osteoporosis) in adults.

-Infertility and miscarriage. Malabsorption of calcium and vitamin D can contribute to reproductive issues.(took me 8 years to get pregnant with my now 16 year old)

-Lactose intolerance. Damage to your small intestine might cause you abdominal pain and diarrhea after eating or drinking dairy products that contain lactose. Once your intestine has healed, you might be able to tolerate dairy products again.

-Cancer. People with celiac disease who don't maintain a gluten-free diet have a greater risk of developing several forms of cancer, including intestinal lymphoma and small bowel cancer.

-Nervous system problems. Some people with celiac disease can develop problems such as seizures or a disease of the nerves to the hands and feet (peripheral neuropathy).

(neuropathy).

Nonresponsive celiac disease

[[Some people with celiac disease don't respond to what they consider to be a gluten-free diet. Nonresponsive celiac disease is often due to contamination of the diet with gluten. Working with a dietitian can help you learn how to avoid all gluten]]

E. People with nonresponsive celiac disease might have:

-Bacteria in the small intestine (bacterial overgrowth)

-Microscopic colitis

-Poor pancreas function (pancreatic insufficiency)

-Irritable bowel syndrome

-Difficulty digesting sugar found in dairy products (lactose), table sugar (sucrose), or a type of sugar found in honey and fruits (fructose)

-Refractory celiac disease

****In rare instances, the intestinal injury of celiac disease doesn't respond to a strict gluten-free diet. This is known as refractory celiac disease. If you still have signs and symptoms after following a gluten-free diet for six months to one year, you might need further testing to look for other explanations for your symptoms*****

END NOTE

Now,  I wanted to explain all of the things that a celiac person may have as complications to this disease. There are so many more including sinus problems, Rhuematoid arthritis, lupus, Sjogrens Disease, not limited to Thyroid diesease, multiple sclerosis, basically- autoimmune disorders. Explaining it (Celiac) is  like an allergy and your body goes into attack mode and plays Russian Roulette on your body. Everyone with Celiac may not be identical which makes every case, a person with the disease/allergic reactions and symptoms. 

 

I did quote some of this from a MAYO CLINIC newsletter/info regarding symptoms.

I think when you've met one person with celiac...you've met ONE person with  Celiac.. because we vary in symptoms. 

My issues have been getting worse to include Rheumatologist, now I take Methotrexate. I have to see a pain management doctor for Rheum arthritis, osteoarthritis, Osteopenia, a very dedicated Physical Therapist to keep active. And a Obgyn to have a hysterectomy. It is an auto immune issue and allergy. 

Last thing, this isn't fo argue or point to, "this is that, not this" I believe every person's case  is extremely variable! 

Hope this helps for anyone who is  reading my post! 

 

Thank you, 

Laura 

 ****Credit to Mayo Clinic for more accurate information***