3 doctors suspect celiac disease

[mannybilly]

I started having random GI issues on the 9th after eating a lot of ice cream, within 2 hours I had the runs, following the runs i had this heated discomfort all over my stomach, bloating and lots of gas from the back end and the front end, loose stool that came with mucus and undigested foods. I had this random under skin rash that was itchy and it felt like a allergic reaction, almost like a fiber glass itch in my skin. went to the ER the doctor saw no concern. I had some GERD acting up eventually had my omeprazole refilled and felt better there. my anxiety has been super high due to high stress since April after 2 losses from my dog and grandpas passing, following a new job in veterinary that was more stressful and scary, euthanizing on day 3. I rushed to the ER twice in a span of 3 weeks and told it was all stress/anxiety and went home. labs were beautiful no concerns via x-rays either. i felt tensed for the remainder of the time until I had these GI issues. i went to Urgent care and let them know some foods triggered me to feel worse, I felt tired, burnt out and felt more sensitive to dairy and stuff like eggrolls, pizzas, nan bread, garlic sauce, hamburgers, donuts, french fries. anytime i ate this later in the night i experienced the need to use the restroom, a bit of tightness in the stomach and nausea. my symptoms diminished after I cut our dairy and most fatty foods and found improvement even stools being semi normal and larger. i get thin stool too. my hair tends to fall out more recently. I get these odd aches and had weird headaches when those episodes came about, throbbing and more dull. my anxiety has been so heightened too. both the urgent care doctor and ER doctor with my recent visits said my labs were phenomenal but to follow up with my primary doctor, and told me if i ever got tested for celiac disease. and diagnosed me with IBS. the hospital doctor definitely pin pointed to chronic GI issues as I had relief after using the restroom. i had an over the phone with my primary and he said over the phone its 1-4 things, lactose, food poisoning, IBS-D and or Celiac disease, he said i should be tested asap and follow through with a GI right after. i continuously have so much stress and over worry. im awaiting my results and follow up with my doctor on the 9th. i also have noticed more brain fog and feeling mentally cloudy, forgetfulness too.

[mannybilly]

my libido has dropped drastically recently. i am 26 with history of GAD, OCD, Asthma, GERD. I had potential Ulcerative Colitis in 2019 with remembering these symptoms before and lost a lot of weight from being 128 down to 101 in 3 weeks. a lot of nausea would happen late at night with any foods i ate, i realized spicy foods and chips i did research on had gluten would make me puke. 

[trents]

Make sure you don't reduce your gluten intake (wheat/barley/rye products) until all testing for celiac disease is complete. The first stage of testing involves a blood draw which is sent to a lab to check for celiac antibodies. If any of the celiac antibody tests are positive, you will likely be scheduled for an endoscopy with biopsy of the small bowel lining to check for damage to the villous lining of the small bowel which is caused by the inflammation gluten produces for those with celiac disease. That endoscopy/biopsy is the second stage of testing and is used to confirm positives from the antibody tests. You could also have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but is 10x more common and does not damage the villous lining of the small bowel. There is no test for it. Celiac disease must first be ruled out.

By the way, welcome to the forum, @mannybilly!

Edited September 4, 2024 by trents

[mannybilly]

thank you!

i have had gluten about once a day or every other day

[mannybilly]

2 minutes ago, mannybilly said:

thank you!

i have had gluten about once a day or every other day

i did have eggrolls recently that i did announce before hand and let him know which he says was perfect

[trents]

That may not be enough. The most recent guidelines are calling for the daily consumption of 10g of gluten (an amount found in about 4-6 slices of bread) for at least two weeks leading up to the day of testing. One thing our community knows is that many medical practitioners are not up to date when it come to diagnosing celiac disease and advising their patients.

[mannybilly]

I did research on beyond celiac and everything i have been able to find matches my criteria. I have a convo with him soon.

I just realized we can edit messages this all started with loads of ice cream one day had like 5 scoops and then boom 2 hours i had runs. 

[Wheatwacked]

Each of your symptoms could be caused by Celiac Disease and the malnutrition it causes.  What are the chances of having GAD, OCD, Asthma, GERD, Ulcerative Colitis, bloating and lots of gas from the back end and the front end, loose stool that came with mucus and undigested foods, anxiety has been super high, thin stool, hair tends to fall out, odd aches and weird headaches throbbing, lower libido and IBS? Ten plus diagnosese all from different causes?  Definately fits Celiac Disease with multiple vitamin deficiencies.  Over 200 symptoms have been linked to Celiac Disease.  

9 hours ago, mannybilly said:

my primary and he said over the phone its 1-4 things, lactose, food poisoning, IBS-D and or Celiac disease, he said i should be tested asap and follow through with a GI right after

As trents pointed out, you should continue eating as much gluten as you can until the diagnosis is complete.  The blood tests look for antibodies to the gluten and an endoscopy looks for physical damage to your small intestine.

You should also ask to be tested for Vitamin D (anxiety), choline (poor fat digestion), urinary iodine concentration (hair falling out), Thiamine (neurological, gastrointestinal beriberi) as well as B5. B6, B12. These difciencies are common with Celiac and can cause your symptoms and are not usually checked.

Choline was officially recognized as an essential nutrient by the Institute of Medicine in 1998.  de novo synthesis of choline alone is not sufficient to meet human requirements. Mean choline intakes for older children, men, women and pregnant women are far below the Adequate Intake established by the IOM. Given the importance of choline in a wide range of critical functions in the human body, coupled with less than optimal intakes among the population, dietary guidance should be developed to encourage the intake of choline-rich foods.  Choline: An Essential Nutrient for Public Health

Quote

Choline is as essential nutrient for humans, and it is necessary for the structural integrity and signaling function of all cells. Choline is also used for neurotransmission, where choline combines with another compound called acetyl CoA, forming acetylcholine, a neurotransmitter of muscle activation. Since phosphatidylcholine is a precursor to acetylcholine, it has been used for the purpose of strengthening and toning LES-muscle contraction.[5] Choline can be found in foods such as eggs and meats including poultry and fish. Higher doses of choline are needed for the treatment of GERD; therefore, supplementation with phosphatidylcholine is the best option in comparison to food sources.  Gastrointestinal Reflux Disease - A Naturopathic Approach

 

 

[mannybilly]

3 hours ago, Wheatwacked said:

Each of your symptoms could be caused by Celiac Disease and the malnutrition it causes.  What are the chances of having GAD, OCD, Asthma, GERD, Ulcerative Colitis, bloating and lots of gas from the back end and the front end, loose stool that came with mucus and undigested foods, anxiety has been super high, thin stool, hair tends to fall out, odd aches and weird headaches throbbing, lower libido and IBS? Ten plus diagnosese all from different causes?  Definately fits Celiac Disease with multiple vitamin deficiencies.  Over 200 symptoms have been linked to Celiac Disease.  

As trents pointed out, you should continue eating as much gluten as you can until the diagnosis is complete.  The blood tests look for antibodies to the gluten and an endoscopy looks for physical damage to your small intestine.

You should also ask to be tested for Vitamin D (anxiety), choline (poor fat digestion), urinary iodine concentration (hair falling out), Thiamine (neurological, gastrointestinal beriberi) as well as B5. B6, B12. These difciencies are common with Celiac and can cause your symptoms and are not usually checked.

Choline was officially recognized as an essential nutrient by the Institute of Medicine in 1998.  de novo synthesis of choline alone is not sufficient to meet human requirements. Mean choline intakes for older children, men, women and pregnant women are far below the Adequate Intake established by the IOM. Given the importance of choline in a wide range of critical functions in the human body, coupled with less than optimal intakes among the population, dietary guidance should be developed to encourage the intake of choline-rich foods.  Choline: An Essential Nutrient for Public Health

 

 

Last night i ate some flour chips and woke up feeling absolutely sick, the urge to use the restroom, nausea, vomitted bile, felt fatigue and weak. Doesnt help its also been hot here either  

[Wheatwacked]

Talk to your doctor about getting the blood work done as soon as possible.  Today would be good.  If they come back as Celiac you could put off the endoscopy and do an endoscopy later after a Gluten Challenge.  But, many find they are more sensitive to gluten after being gluten free for a while.

At this point the only reason for delay is getting a GI to order the endoscopy and getting it scheduled.  Working as a vet, maybe you could call in some favors to speed up the process.  In a profession that promotes "do no harm" making you eat gluten to get a diagnosis is not doing no harm.

Getting the vitamins baseline would be good before starting but insurance may refuse to pay for it.

 

 

[mannybilly]

10 minutes ago, Wheatwacked said:

Talk to your doctor about getting the blood work done as soon as possible.  Today would be good.  If they come back as Celiac you could put off the endoscopy and do an endoscopy later after a Gluten Challenge.  But, many find they are more sensitive to gluten after being gluten free for a while.

At this point the only reason for delay is getting a GI to order the endoscopy and getting it scheduled.  Working as a vet, maybe you could call in some favors to speed up the process.  In a profession that promotes "do no harm" making you eat gluten to get a diagnosis is not doing no harm.

Getting the vitamins baseline would be good before starting but insurance may refuse to pay for it.

 

 

I had the test done last friday i just called earlier today and nothing has come back

[Wheatwacked]

If you want help deciphering the results post the post the test, name, your result and the lab's normal range.

Something to read while waiting for the results.

 

[mannybilly]

i got my test results but they are simple and not very descriptive

[trents]

What is the reference range? There are no universal standards for these tests. Each lab uses it's own scale for reference ranges so unless you supply the reference range for what that lab uses for the normal range, we cannot comment on the result.

Edited September 6, 2024 by trents

[trents]

Is the (tTG) IgA Ab the only test they ran? That is far from a comprehensive celiac panel.

[mannybilly]

1 minute ago, trents said:

What is the reference range? There are no universal standards for these tests. Each lab uses it's own scale for reference ranges so unless you supply the reference range for what that lab uses for the normal range, we cannot comment on the result.

thats what i was curious about there wasnt a refference range i did research and found that that was considered a "low positive" being
0.0-0.4 negative
0.5-1.0 weak positive
1.0-10 positive

 

Just now, trents said:

Is the (tTG) IgA Ab the only test they ran? That is far from a comprehensive celiac panel.

apparently there was more, this was the only one in my patient portal

[trents]

So, for the tTG-IGA you have a weak positive result. I suspect if you had been consuming a greater amount of gluten as I mentioned in my post above, that score would have been higher.

[mannybilly]

Just now, trents said:

So, for the tTG-IGA you have a weak positive result. I suspect if you had been consuming a greater amount of gluten as I mentioned in my post above, that score would have been higher.

correct around that time i had been off of gluten for a few days since the 27th, and my antigen test was on the 30th. i did have a phone call with my doctor a few days ago after getting glutened again and told him my results and he suggests theres an issue with gluten intolerance/sensitivity or celiac hands down. ive been free from gluten since the 3rd going into the 4th of this month and my gut feels a lot better. only thing i feel is joint aches, i had a weird headache, GERD acting up and gas.

[trents]

There are other antibody tests that can be run which seem to be more accurate for those having been on reduced gluten diets leading up to the blood draw. Namely, the DGP-IGA and the DPG-IGG. 

[mannybilly]

26 minutes ago, trents said:

There are other antibody tests that can be run which seem to be more accurate for those having been on reduced gluten diets leading up to the blood draw. Namely, the DGP-IGA and the DPG-IGG. 

from what i understood there was more that havent come in yet 

 

[RMJ]

6 hours ago, mannybilly said:

thats what i was curious about there wasnt a refference range i did research and found that that was considered a "low positive" being
0.0-0.4 negative
0.5-1.0 weak positive
1.0-10 positive

Please be careful with interpretation if there wasn’t a reference range included.  The units are not absolute, so each manufacturer makes their own range.  Sometimes negative is 0-3, sometimes 0-19, from what you’ve seen sometimes 0.0 to 0.4 . . .

[trents]

Good catch, RMJ. I didn't read his post carefully enough to realize the said "I did some research and found". So his ranges did not come from the lab that did the testing . . . and I explained the importance of that to him in an earlier post.

[RMJ]

9 minutes ago, trents said:

Good catch, RMJ. I didn't read his post carefully enough to realize the said "I did some research and found". So his ranges did not come from the lab that did the testing . . . and I explained the importance of that to him in an earlier post.

I gave a caution but was hoping the research had found the range used by that lab.

[mannybilly]

I may have been gluttened again, my soup happened to have noodles in them. i had this weird cold feeling around my body when its been a hot day. i am still sweating but cant distinguish heat easy or I feel my bodies senses are thrown off. I felt more irritable and anxious, partially numb. i had a brain MRI and nothing was wrong with me there. i noticed my stools are attempting to return to normal size with slight softness to them. i still get body aches and all that. my temperature is normal at 97.8 and ive been on a hardcore soup diet and protein burgers from in an out. and I wait to eat because of the anxiety to eat anything. my stools look like they dont digest food very well still and are different in color. i still get gas and my stomach sounds like its digesting too.

[trents]

What do you mean you may  have gotten glutened again? "my soup happened to have noodles in them." If the noodles were made of wheat, you did get glutened. Why did you eat it? Did you not see the noodles or not read the ingredients?

Edited September 8, 2024 by trents