Am I Coeliac?

[carlisima]

I am wondering if any of you can help. 5 years ago when we moved to Spain everything changed. I could no longer stomach food, I always felt ill and I was so bloated, miserable and angry. After a few months I deduced it was the fresh bread I was eating every morning and cut it out. I have never really gotten better. I have had so many coeliac blood panels done but they always come back negative however I have kinda cut gluten out of my diet. Maybe there will be trace amounts every week or when I am desperate to eat something I really want. 
here are my symptoms and I’m wondering if I should go ahead and have the biopsy: 

sore throat upon eating 

feeling out of it 

pain in lower right abdomen 

recurrent thrush everywhere

mouth sores all over mouth

bladder pain

tiredness weakness hair loss pale skin. 
 

on another note I do actually think my son has it, this is based on a mothers instinct and the fact his adult teeth have so much discolouration (he’s 8 years old) but my husband thinks I’m insane! I almost need to prove I have it to get him tested. Does anyone have any advice? 
 

Thank you
 

[trents]

Welcome to the forum, Carlisima!

"After a few months I deduced it was the fresh bread I was eating every morning and cut it out. I have never really gotten better."

Would you explain that? If it didn't make you any better to cut out the fresh bread every morning, how is it that you deduced it was the problem?

Another question I have is were you still eating gluten when you had your celiac panels done? Many people make the mistake of going off gluten before they get tested and that invalidates the testing.

Many of the symptoms you describe suggest nutritional deficiencies, particularly the mouth sores, hair loss, pale skin, weakness, and tiredness.

Thrush is a yeast/fungus problem. Have you been tested for candida overgrowth? Is your diet high in carbs?

Have you been checked for diabetes?

Are you anemic?

What medications are you on if you don't mind me asking?

Edited May 21, 2022 by trents

[carlisima]

Thank you for your reply. 
in a nutshell, yes I barely eat gluten if I’m honest. Except for the odd time where I look at something and think ah I really want it and the gluten free is not the same.

Last week I went home (UK) and went mental on foods I’d not eaten for a long time. I spent the whole time feeling ill but I had to do it just to do it. 
 

I take anti yeast medications regularly prescribed by the doctor as it is out of control at times. I wouldn’t say I ate a bad diet but for some reason if I eat anything not good it comes right back. I take probiotics, and I am not anaemic. 
 

The only thing that came back slightly out of the ordinary on bloods was my mean platelet volume is higher than usual. 
 

See below for coeliac:

C- REACTIVE PROTEIN)<1mg/L[ < 5 ]Antibodies

ANTI-ENDOMYSIAL IgA ANTIBODIES

Negativo título <1/5IFI

Reference Range: Title <1:5

ANTI-ENDOMYSIAL IgG ANTIBODIES

Negativo título <1/5IFI

Reference Range: Title <1:5

Ac deaminated gliadin IgA0,7UI/mL[ < 7 ]Interpretation of results:

Negative: Less than 7 IU / mL

Indeterminate: 7 - 10 IU / mL

Positive: Greater than 10 IU / mL

For celiac disease

Diagnostic sensitivity: 82.7%

Diagnostic specificity: 98.4%

Anticuerpos anti gliadina deaminada IgG<0,4UI/mL[ < 7 ]

Interpretación de resultados:

Negativo: Inferior a 7 UI/mL

Indeterminado: 7 - 10 UI/mL

Positivo: Superior a 10UI/mL

Para enfermedad celíaca

Sensibilidad diagnóstica: 87,8%Especificidad diagnóstica: 98,4%

ANTIBODY (IgA)<1,23U/mL

FluoroimmnunoassayReference Range:

<7 U/m

Equivocal: 7 - 10 U/mL

Positive: >10 U/m

Anticuerpos anti Transglutaminasa IgG<1,23U/mL

Sorry about how they’ve come out the results but they look super negative! 
thanks for any advice. 

 

[trents]

You say, "in a nutshell, yes I barely eat gluten if I’m honest. " So that makes me wonder if your celiac testing is always negative because you are not consuming enough gluten on a regular basis. The testing is designed to measure the antibodies produced by the inflammation in the small bowel lining produced by the ingestion of gluten. No gluten, no inflammation. No inflammation, no antibodies. Make sense?

The Mayo Clinic guidelines for serum antibody testing is the daily consumption of 2 slices of wheat bread (or the equivalent) for 6-8 weeks leading up to the test.

The other possibility is that you have NCGS (Non Celiac Gluten Sensitivity). It shares many of the same symptoms with Celiac Disease but does not damage the small bowel villi and therefore does not produce antibodies. There is no test for NCGS. Celiac Disease must first be ruled out. The antidote is the same, however, and that is total abstinence from gluten. 

Also, one thing that is missing from your test numbers is total IGA. If total IGA is low that will suppress individual IGA celiac tests. Was that measure never taken by your doctors?

It seems to me that you either need to go back on gluten according to the Mayo Clinic guidelines and get retested or get more serious about eliminating gluten from your life. You seem to be waffling around in this middle ground.

 

[Wheatwacked]

19 hours ago, carlisima said:

I take anti yeast medications regularly prescribed by the doctor as it is out of control at times.

I'm not sure but I think the yeast infection is the goal to focus on. Every time you kill of the yeast you are killing good bacteria and back to zero.  If GFD makes you feel better...

Odd the timing with the diet change and all. Nutrient Deficiencies?

Quote

Conditions that can be remedied by iodine supplementation are: ADD, ADD/ADHD, breast disease, overgrowth of yeast, excess mucous production, fatigue, fibrocystic breasts, headaches, migraine headaches, hypertension, liver disease, ovarian disease, carotid duct stones, prostate disorders, thyroid disorders, vaginal infections, and many more common ailments. Iodine is plentiful in sea organisms such as seaweed. In fact, seaweed is one of the most abundant sources of iodine, because seaweed has the ability to concentrate a large amount of iodine from the ocean in water" 1. Consuming daily portions of seaweed salad would be an excellent source of iodine supplementation.    Iodine Insufficiency in America: The Neglected Pandemic - American College for Advancement in Medicine (ACAM)

 

[carlisima]

On 5/22/2022 at 5:28 AM, Wheatwacked said:

I'm not sure but I think the yeast infection is the goal to focus on. Every time you kill of the yeast you are killing good bacteria and back to zero.  If GFD makes you feel better...

Odd the timing with the diet change and all. Nutrient Deficiencies?

 

Thank you all for your advice. I have booked in for an endoscopy and I am now starting the gluten challenge for 4 weeks prior. Any advice for me? 

[trents]

Just a heads up. Those who have been eating gluten free for some time typically discover that re-exposing themself to gluten during the challenge creates much stronger reactions. Not sure how that will be for you since it sounds like you were still getting some gluten all along.

[carlisima]

Thank you so much to everyone that responded. I had my endoscopy today and it is indicative of coeliac disease. I am awaiting the biopsy now. 
 

Thanks