Do I really need to get a biopsy?

[Ryangf]

Hi everyone I’m somewhat new here- at least this is my first time posting. 
 

I have been having persistent stomach issues since July of 2024- so around 7 ish months I’ve been having issues. At first I thought it was just a bout of constipation because I had had that issues before but- it simply did not go away at first I went to urgent care for my bloating and stomach pain and constipation and they basically didn’t really check anything and just passed it off as constipation and gave me stool softeners. Then I started having joint pain and a sharp stinging sensation in my back that debilated me and urgent care passed it off as muscle spasms. Then I finally went to my primary care doctor and they put me on a lowfodmap diet- and that didn’t help…(I was still eating gluten product),then I told her that didn’t help and then she didn’t contact me for several weeks not even trying to pinpoint the cause of my discomfort. So I started doing my own research from reputable sites- and analyzed my symptoms. Then suddenly I started losing weight rapidly 23 pounds in a month to be exact and I had like pale yellowish stool. Then I started realizing maybe it was gluten that was irritating me and I cut it out and started feeling a little bit better but still had some discomfort. Then I contacted my doctor again for a blood test for it and it came back negative. But I still was worried at least if it could be anything else going on in my stomach though I was sure it was celiac disease. Then after me practically begging her to let me get an endoscopy eventhough she insisted I was fine- I choose a doctor to see that was not my primary care doctor to evaluate me and they recommended I get an endoscopy…and I had an endoscopy a few weeks later. That came back negative for celiac with my biopsy too and no other damages from my ultra sound I got or anything. So I was naturally extremely confused. So I started to feel like maybe I was over exaggerating. But then I started researching on endoscopies- and found out for a confirmed positive blood test and endoscopy I had to be CURRENTLY eating gluten something neither of my doctors notified me about nor the GI specialists. So I realized my doctor probably would not order me another endoscopy…and also I just decided do I really need to go through the pain of eating gluten again for an endoscopy- when I could just stop eating it? So I weighed it and at the moment I decided- I would not get an endoscopy and just be gluten free- and for a little bit- I was fine- then my stomach started hurting again- a few times could’ve been from cross contamination but I also saw that a lot of the gluten free products I was eating contained corn and I tested it and stopped eating corn products for a few days and felt better. So I also did research on corn and found that some people with celiac disease can respond negatively to corn because it has a protein in it similar to gluten. So I cut that out completely and felt better for a long time. Except for ocassional corn cross contaminations I felt fine- until recently where I think I may have had corn products a few times consistently- and not noticed despite my stomach upset because I had been dealing with stomach issues so long I thought it was the norm. Now for the past few days possibly because of the consistent corn exposure for the past month I’ve been having an upset and bloated stomach eventhough I stopped eating the corn- because I think (though studies are not sure on corn damaging celiacs stomach lining) corn may have been damaging my stomach lining again during that time- and I may be developing some new intolerances or conditions. I want to go get that checked out but I don’t want to be gaslighted by doctors again- cause it makes me feel crazy. And I’m also debating on whether or not I want to go through the pain and stomach damage again for 2-6 weeks to really confirm if I have celiac disease- and I’ve been even more reluctant because now I am in classes again and I have to be in class consistently standing up a lot (culinary class) for multiple hours on end and I don’t think me being fatigued and sick and in pain is going to be good for me during that time. Should I get an endoscopy to confirm if I have celiac disease again this time actually eating gluten up to that point- or should I just first try to figure out what intolerances I may have developed or other conditions via a doctor- or wait for a while until my stomach lining has repaired sufficiently or at least enough before getting an endoscopy and a blood test again at a time when I am not busy a year or so from now while maintaining a gluten free corn free diet until my endoscopy is booked and then I will begin eating gluten and corn up until the endoscopy? (Sorry I know that was a lot.) 

[Wheatwacked]

Welcome to the forum @Ryangf.

You don't need permission to not eat anything that makes you feel bad; including wheat, barley or rye products.

Wheat flour has an omega 6:3 ratio of 22:1.  Our bodies do best at less than 3:1.  Omega 6 fatty acids are generally inflammatory.

There is really no point in more testing.  For some it takes 10 years to finally get a positive.  Once you start eating gluten free why bother going back?  Peer pressure.  Some countries have financial benefits with Diagnosis.  The only treatment for both Celiac Disease and Non Celiac Gluten Sensitivity is no contact with Gluten.  And you already know the answer, just in a stage of denial.  Some go through a mourning period.  You are losing a friend.  And there's the anger.  Also, gluten has addictive properties, it activates the opiod receptors.

While healing you will experience new intolerance for foods that never bothered you before.  Partially blame it on the opiod receptors, they were numbing you.  And people may taunt you.

One aspect of recovering from Celiac and NCGS is vitamin and mineral deficiencies.  Celiac causes malabsorption from small intestine villi damage.

Some of your symptoms will go away with the gluten but others are caused by deficiencies in the western diet and your particular food choices.

Vitamin B1, B2, B3, B5 are essential for producing ATP energy for the cells.  Vitamin D deficiency is virtually ubiquitous in Celiac Disease and the other autoimmune diseases.  That, I believe is why many have multiple autoimmune diseases.  A blood level of 200 nmol/L or 80 ng/ml is the normal that gives the most immune system, bone health, mental health.

Other common deficiencies in the western diet are iodine, choline, potassium.

To replenish them you need a much higher intake than the minimum RDA.

 

[trents]

Welcome to the forum, @Ryangf!

If you don't have celiac disease you could still have NCGS (Non Celiac Gluten Sensitivity). They share many of the same symptoms but NCGS does not damage the lining of the small bowel as does celiac disease. Some experts feel NCGS can be a precursor to the development of celiac disease. NCGS is 10x more common than celiac disease. There is no test for it. A diagnosis of NCGS is arrived at by first ruling out celiac disease by formal testing. At the end of the day the antidote for both is the same, namely, life-long abstinence from gluten.

Yes, corn is a common cross-reactor with gluten for some celiacs. So are oats, soy, eggs and dairy. 

I have concern with your possible exposure to wheat flour dust during your culinary training. It gets in the air, you breathe it in, it gets trapped in the mucous of your mouth and airway and winds up in your gut.

If you decide to go forward wit the "gluten challenge" for formal celiac disease testing, aim for the daily consumption of 10g of gluten (about the amount in 4-6 slices of wheat bread) for four weeks leading up to the day of either the blood draw or the endoscopy/biopsy.

[Scott Adams]

Welcome to the forum, and thank you for sharing your detailed experience. It sounds like you’ve been through a lot over the past several months, and it’s understandable to feel frustrated after navigating unclear diagnoses and conflicting advice. Since you’ve found relief with a gluten- and corn-free diet, it might be worth continuing that approach for now, especially given your current commitments to culinary classes. You could consider working with a knowledgeable dietitian or a gastroenterologist who specializes in food intolerances and celiac disease to explore potential intolerances or other conditions without immediately reintroducing gluten. If confirming celiac disease is important for your long-term health management, you could plan for an endoscopy during a less busy period, ensuring you follow the gluten challenge protocol beforehand. In the meantime, prioritizing your well-being and avoiding known triggers seems like a practical step. Always advocate for yourself with doctors, and seek second opinions if needed—your health concerns are valid.

Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.

Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.

This article may be helpful:

 

 

[Ryangf]

@Wheatwacked Unfortunately I haven’t been able to intake a sufficient amount of iodine through means of salt because most big name brand iodine salts contain dextrose which is a corn derivative…I have only been able to use kosher salt.

[Ryangf]

@trents As much as I want to believe I have NCGS it seems unlikely that I do based on the fact that it caused other possible intolerances to other foods and I had clear signs of malnutrition exhibited by my rapid weight loss. Which may indicate stomach lining damage- as well as the anemia I already had has worsened. As far as the wheat flour particles that is valid- I may start putting on a mask when i know we’re going to be handling wheat otherwise I don’t really need to wear one because the wheat and any type of flours are in a small corner of the room far away from the cooking a preparing space and we have a cleaning regimen.

[Ryangf]

@Scott Adams Thank you for your input- and I do think it’s best for me to just wait a little while before I do gluten challenge for a biopsy. Getting a dietitian is also a good idea.

[Wheatwacked]

Kosher salt is not usually iodized.

Shortly after starting GFD in 2014, I realized I wasn't getting enough iodine.  Growing up in the 50's and 60's we ate bread that used iodine as a dough modifier so each slice had about 100 mcg of iodine.  A sandwich and glass of milk supplied 300 mcg a day.  In the 70's they stopped using iodine as a conditioner in the US.  Then everyone got scared of milk.  The US intake of iodine dropped 50% since 1974.  Prescriptions of Thyroxine for hypothyroid disease doubled in the same period.  I tried using iodized salt and seaweed and took an expensive thyroid supplement but it wasn't enough.  In 2014 I had a sebaceous cyst (third eye blind).  The previous 6 cysts on my face had all drained and healed with no problem back in the 1990,s.  One on my check had sugically removed. They are genetic from my mom and my brother and son also get them in the same places.  This one I did not have surgery for because I wanted a bellweather to moniter healing.  It did not start healing until I started until 10 years when I started taking 600 mcg of Liquid Iodine a year ago Nov 2023. Lot's of comment about how it was offputting and maybe cancer, it was deep, down to the bone, but I can be obstenant.  Now it is scabbing over and healing normally.  Vision is returning to my right eye (glucoma), musle tone in my chest was the first sign of improvement.  For healing, iodine breaks down defective and aging cells to make room for new growth.

I take Liquid Iodine drops from Pipingrock.com but there is also Strong Iodine and Lugols Solution. 50 mcg/drop a dropper full is 12 drops, 600 mcg.,  usually I put it in a can of Red Bull, My brother, son and his family also started taking it. https://www.pipingrock.com/iodine/liquid-iodine-2-fl-oz-59-ml-dropper-bottle-14690 390 drops for $8.  They ship internationally if you can't find it locally.

It the US the Safe Tolerable Upper Limit is 1000 mcg a day.  In Japan it is 3000 mcg a day.  The Japanese traditional diet has 50% less breast cancer, nicer hair, skin and nails, and in the 80's the US educational system dropped down comared to the rest of the world while Japanese kids moved up to the top.  Low iodine affects brain fog.

According to most education rankings, Japan generally has a higher education rating than the United States, with Japan often ranking within the top 10 globally while the US usually places slightly lower.  In the 1960s, the United States was near the top of the world for education, especially for young people. 

Quote

 

The median urinary iodine concentration (UIC) in the US was 32.0 μg/dL between 1971 and 1974 

More importantly, iodine deficiency has recently begun to reappear in some nations that were previously iodine sufficient. Recent studies have suggested that vulnerable UK populations, such as women of reproductive age, pregnant, and lactating women might again be iodine deficient due to a decrease in UK milk consumption [17, 18]. Similar reemergence of iodine deficiency has also been observed in European nations such as Finland, Italy, Hungary, France, Belgium, and Spain [19]. Australia is another example of an industrialized nation that was iodine sufficient for decades until changes in dairy industry practices inadvertently reduced the iodine content of dairy products, contributing to iodine deficiency [20, 21]. The trend of reemergence of iodine deficiency among vulnerable populations such as reproductive age women in the USA appears to mirror the trends in these other industrialized nations.   A Review of Iodine Status of Women of Reproductive Age in the USA

 

About why iodine was removed from medicint:

The Wolff-Chaikoff Effect: Crying Wolf?

About why over 40% of us are vitamin D deficient:

Mayo Proceedings,  Vitamin D Is Not as Toxic as Was Once Thought:

 

Edited February 27 by Wheatwacked