Possible Celiac

[Maa78search]

Hi! 

I'm a 44 yr old female with stomach issues since I was born. I tested negative for antibodies and clear colonoscopy back in 2018, but that GI did not perform endoscopy. I'm scheduled for a new colonoscopy with endoscopy towards the end of May. I've lost close to 30 lbs in 6 months and I'm about 105 now, I get severe pain randomly with lots of mucus and actual foam and I have to force myself to eat I lack appetite 98% of the time, when I am hungry I only crave starches and dairy. All my labs are normal no vitamin deficiencies which seem like a miracle since I never eat. I've got other autoimmune conditions like narcolepsy, small fiber neuropathy, and something not yet diagnosed yet. I had slightly elevated calprotectin, and I haven't changed any thing I eat yet since I thought the antibody test would have been positive if that was the problem ... My new GI seems to think my last GI was not very through at searching for my issue, she stated multiple biopsies would be taken from stomach all the way to the end, and commented if I lose more weight I'd need a feeding tube. Not sure if it's Celiac or IBD or both but I know one thing that triggers the pain and that's beer!! Haven't drank in years but that pain is extreme. My pain is pretty much located in 3 spots actual stomach, upper left near ribs , and lower right end of colon area, its always the same spots and with the pain comes the mucus and foam up to 6 times a day bowel movements no blood. As a baby couldn't have formula had to have goat's milk,  When I was a older kid I had severe stomach pain and the elders in my family made me drink Alka Seltzer and that just induced vomiting (horrible times)  Well Sorry for  my long intro, guess in May I'll know for sure and thanks for reading. 

[trents]

Welcome to the forum, Maa78search!

Which antibody tests were run? Many or most physicians will run only the tTG-IGA instead of a full celiac antibody panel. There are a number of celiac antibody tests that can and should be run since the tTG-IGA will miss about 20% of those from white European extraction and about 80% of those from black African heritage that actually do have celiac disease as confirmed by biopsy.

There is also the possibility that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but for which there currently is no way to test. celiac disease must first be ruled out. NCGS is 10x more common than celiac disease and both require a commitment to gluten free eating.

[Maa78search]

TTG) AB, IGG

<1

U/mL

<6 No Antibody Detected

> OR = 6 Antibody Detected

(TTG) AB, IGA

<1

U/mL

<4 No Antibody Detected

> OR = 4 Antibody Detected

GLIADIN ANTIBODY PANEL    

GLIADIN (DEAMIDATED) AB (IGA)

8

Reference Range: <20 U

Reference Ranges for Gliadin (Deamidated Peptide)

Antibody (IgA):

 ... Show More

GLIADIN (DEAMIDATED) AB (IGG)

6

Reference Range: <20 U

 

Had all of them... 

[Maa78search]

IMMUNOGLOBULIN A . As well

[trents]

Good! You had thorough antibody testing done and all of them were negative.

I would be looking at NCGS. But I also note you said when you were a baby you couldn't tolerate formula and had to be fed goat's milk instead. As an adult are you consuming dairy (bovine)?

[Maa78search]

So yes I'd definitely benefit from the biopsy, just curious would antibodies disappear with longterm disease? Say if a person had it since birth would those antibodies eventually not show?

[Maa78search]

2 minutes ago, trents said:

Good! You had thorough antibody testing done and all of them were negative.

I would be looking at NCGS. But I also note you said when you were a baby you couldn't tolerate formula and had to be fed goat's milk instead. As an adult are you consuming dairy (bovine)?

Yes I drink tons of milk like It's my main source of nutrition since I cannot tolerate eating. Allergy tests done,  no milk allergy.

[trents]

Let's back up a bit.

When you had your antibody testing done, were you still consuming regular amounts of gluten (Defined by the Mayo Clinic as two slices of wheat bread daily or the gluten equivalent)?

CMP (Cow's Mile Protein) can mimic the protein gluten for some people. And we are not talking about an allergic reaction to milk. Different immune system pathway.

No, antibodies would not disappear with long term celiac disease. NCGS does not produce antibodies. NCGS immune system pathways are not well-understood.

[Maa78search]

46 minutes ago, trents said:

Let's back up a bit.

When you had your antibody testing done, were you still consuming regular amounts of gluten (Defined by the Mayo Clinic as two slices of wheat bread daily or the gluten equivalent)?

CMP (Cow's Mile Protein) can mimic the protein gluten for some people. And we are not talking about an allergic reaction to milk. Different immune system pathway.

No, antibodies would not disappear with long term celiac disease. NCGS does not produce antibodies. NCGS immune system pathways are not well-understood.

I was not consuming 2 slices of wheat bread during testing I literally cannot eat a full sandwich and the milk protein would be a interesting factor since I consume so much of it... It's kinda like how diabetics crave sugar, I crave dairy , pasta, rice, potatoes and baked goods. Thanks for the info and input it's for sure helpful. 

[trents]

Pasta and baked goods would be sources of gluten. Gluten is found in wheat, barley and rye. Doesn't have to be sandwich bread, just anything with wheat flour (or barley or rye flour). That's why I added "or the gluten equivalent" to the two slices of wheat bread formula.

"I crave sugar, I crave dairy, pasta, potatoes and baked goods": all of these foods are high in carbs. I wonder if you have a candida infection. I would also suspect you have some vitamin and mineral deficiencies.

Edited March 25, 2023 by trents

[trents]

1 hour ago, Maa78search said:

So yes I'd definitely benefit from the biopsy, just curious would antibodies disappear with longterm disease? Say if a person had it since birth would those antibodies eventually not show?

No, they would not disappear over time. However, we do see instances of remission from celiac disease but it generally returns in time.

[Maa78search]

31 minutes ago, trents said:

Pasta and baked goods would be sources of gluten. Gluten is found in wheat, barley and rye. Doesn't have to be sandwich bread, just anything with wheat flour (or barley or rye flour). That's why I added "or the gluten equivalent" to the two slices of wheat bread formula.

"I crave sugar, I crave dairy, pasta, potatoes and baked goods": all of these foods are high in carbs. I wonder if you have a candida infection. I would also suspect you have some vitamin and mineral deficiencies.

No Candida infection found, had full workup for hidden infections including infectious disease cultures and recent  full workup for vitamin deficiencies amoungst many other blood tests actually through Mayo Clinic all clear .. I was just going back through the GI situation because those symptoms of pain, mucus, rashes, are pretty persistent. I have 1 doc suspecting pancreatitis insufficiency, 1 suspecting crohns limited to small bowel and celiac, and Mayo is still trying to sort if it's all related to the other symptoms. It's hard to determine if any specific food causes more symptoms because the pain  varies besides the beer (that pain was unforgettable). Does Celiac cause excessive mucus and passing straight foam? And I'll add bowel movements do not relieve the pain . 

[trents]

9 minutes ago, Maa78search said:

 Does Celiac cause excessive mucus and passing straight foam? And I'll add bowel movements do not relieve the pain . 

It can, yes.

[Wheatwacked]

In 1976 my son was diagnosed Celiac Disease as soon as he was weaned. He was given Nutramagen formula. We were lucky to find a doctor who knew about Celiac disease and he only had 13 patients.  

I also drink a lot of milk. Most of the time 100% grass fed. It has less omega 6 and never irritates even right before bed. 

Was the alka seltzer original, just aspirin and bicarbonate? That works for me. The other flavors with other stuff is nasty.

6 hours ago, Maa78search said:

All my labs are normal no vitamin deficiencies which seem like a miracle since I never eat.

Most blood tests only measure the amount in the blood and they are tightly controlled by homeostasis. They don't indicate intake status. Vitamin D, homeocyteine, B12 are accurate, but doctors insist that  >20 ng/ml (50nMole/L) is adequate. Lots of evidence points to Vitamin D (25-Hydroxyvitamin D) at 80 ng/ml (200 nMole?L) as the natural replete level

Choline deficiency is a good possible cause of your foamy poop. It is needed to digest fat and low enough can cause Non Alcoholic Fatty Liver, gallstones, gall bladder disease, Fetal neural tube defects and lots more. Only 10% of us eat the minimum. Phosphatidyl choline supplements will help. Choline is one of the most abundant salts in bile and helps keep the body clean

Why Do I Have Foamy Poop? "Foamy poop is typically the result of an increased amount of fat in the stool. This can be caused by a number of conditions including celiac disease, chronic pancreatitis, giardiasis, and cystic fibrosis. In babies, foamy poop can be related to breastfeeding. Treatment specific to the cause of your foamy stools will alleviate most gastrointestinal symptoms."