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Misscellany

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Misscellany Rookie
Misscellany
Posted

I was trying to lose the last 10 lbs of my pregnancy weight and went on a liquid diet. I was only on the liquid diet for a couple of weeks before I ate a baguette. About 8 hours after I ate the baguette I developed itchy bumps on my elbows and knees. I Googled this and found that it most likely was DH. When reaching this I find Celiac and I realize I have about 90% of the symptoms for Celiac. A couple of days after eating the baguette i develop this mouth ulcer as well. I have never had that before. My question is, when I went gluten-free for these couple of weeks and then had gluten, is it normal to have a stronger reaction to it than what you would have if you never went gluten-free? I have suffered 5 miscarriages as well, unexplained. Dealt with extreme fatigue and diarrhea for the past 15 years at least. I did take the Celiac panel blood test yesterday morning and went gluten-free as soon as they had drawn my blood. The thing is, I'm IgA deficient, will they still be able to tell from my blood? Also, does this mouth ulcer look like something you'd get with Celiac? 

mouthulcer.webp

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Jmg Mentor
Jmg
Posted
26 minutes ago, Misscellany said:

My question is, when I went gluten-free for these couple of weeks and then had gluten, is it normal to have a stronger reaction to it than what you would have if you never went gluten-free?

Yes this is not uncommon

27 minutes ago, Misscellany said:

The thing is, I'm IgA deficient, will they still be able to tell from my blood?

They screen for this, or at least they should (see below). You need a full celiac panel:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

Some more info and links here

28 minutes ago, Misscellany said:

Also, does this mouth ulcer look like something you'd get with Celiac?

I don't have celiac, but that's what I used to get before going gluten free.

29 minutes ago, Misscellany said:

I did take the Celiac panel blood test yesterday morning and went gluten-free as soon as they had drawn my blood

Ok, certainly understand you want to go off it and feel well, but consider staying on it till the results come through, if they've not done the full panel you may want to request it? Going back on gluten can be far more difficult to manage than staying on it for testing purposes in the first place. Given your history I'd hope that regardless of result they'd want to order an endoscopy, but again you need to be eating gluten for an accurate test.

Very best of luck, hope you find your answer!

 

Misscellany Rookie
Misscellany
Posted
  • Author

Thank you for your reply. 

If I do test positive, is the endoscopy really necessary? And if I do have it, I'm convinced I've had it for at least 15 years. Will 1 week of a gluten-free diet really repair all the damage in my intestines so they won't get a positive result from the endoscopy?

Jmg Mentor
Jmg
Posted
3 minutes ago, Misscellany said:

 If I do test positive, is the endoscopy really necessary?

The endoscopy is the 'gold standard' for diagnosis, most doctors won't diagnose without it. Although you may find if your tests are very high on the range and your past medical history that a doctor may diagnose without it. 

5 minutes ago, Misscellany said:

I'm convinced I've had it for at least 15 years. Will 1 week of a gluten-free diet really repair all the damage in my intestines so they won't get a positive result from the endoscopy?

It's unlikely, but this is a difficult disease to diagnose. Some people heal very quickly on the diet. Damage to the intestines may be patchy, may be outside the reach of the endoscope. Antibodies in blood may disappear very quickly or remain a long time. If you check the links in my last post you'll see just how many different ways celiac can present, you may find other things you've experienced could be down to gluten. For example I changed my diet primarily because of neuro symptoms and then found that my chronic back ache disappeared. 

You may be ok resuming gluten 2 weeks before your biopsy, but it may be more unpleasant going back on it then that it would staying on it now. Perhaps if you can wait until the blood test results are back and you get a chance to discuss with your doctor? If there's a long wait for the scope you could go gluten free, keep a food diary and track your response then do the challenge nearer the time. Something to think about anyway. :)

11 minutes ago, Misscellany said:

Thank you for your reply. 

You are most welcome. I know this is scary, I know you want answers and want to be well and I know that if you're anything like me you're torn between wanting this to be right and also being worried about the implications for all those years you've been experiencing different symptoms. The good news is you've found a really good community with some great people who will help and who have been through it all.  I'm sorry for what you've been through, I hope you'll soon have some answers, it sounds like you're on the right track and if so, you can look forward to feeling better than you thought possible once you're gluten free. 

Hellodee2 Explorer
Hellodee2
Posted

I hope you get a definitive answer soon but from what you've said you have celiac. I used to get canker sores all of the time but haven't had one since going gluten-free. I would keep eating gluten until your endoscopy because my reaction is 100 times worse now when I eat gluten. I vomit until it's gone. Then I have the mental problems for a couple of weeks. From your description of your skin, I would say you have DH. But you really need the endoscope to tell you 100%.

Good luck. If you have celiac, know that it is much easier to live with now than 50 yrs ago or even 10 yrs ago.

Misscellany Rookie
Misscellany
Posted
  • Author

I have a 10 month old son. He naps twice a day and I absolutely need to nap when he naps or I am unable to function. I'm on my third day of gluten-free now and my son just went down for a nap and I don't feel the need to nap! With how different I feel gluten-free, I can't imagine going gluten again, even though I've been off for only 3 days. Screw the endoscopy, if my blood test is positive I'm convinced I do have celiac and that will be enough for me to tell my son's pediatrician about my diagnosis so he can be monitored as well. It's my OBGYN that requested the celiac panel for me after I asked, so maybe she will be more willing to diagnose me based off the blood test than what a gastro doctor would. 

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