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Need A Little Help

Dugudugu

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Dugudugu Rookie
Dugudugu
Posted

Okay, here

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MitziG Enthusiast
MitziG
Posted

I would have your doctor biopsy the rash. It needs to be done next to the lesions, not directly on them. If it is DH, this should show up. Since you have had bloodwork done already, and are 3 wks gluten free, I would stick with the diet. I can relate to the major fatigue, but for me it was 6-7 mos on the gluten-free diet before I noticed a difference in fatigue. You may want to remove casein (milk protein) for now too. It is pretty inflammatory and for mme, that really kicked the fatigue in the butt for good.

I think you are on the right path, but healing is a slow process at times, so don't get discouraged!

Mom-of-Two Contributor
Mom-of-Two
Posted

I am 4 months gluten free and JUST starting to feel increase in energy, decrease in fatigue, and it hasn't been drastic. Some take more time!

squirmingitch Veteran
squirmingitch
Posted

A biopsy of the dh rash is almost certain to turn up negative. First --- there is a 37% false neg. rate. 2nd --- the OP has been gluten free for 3 weeks & just like with all the other celiac tests you must be eating gluten even for the dh biopsy. 3rd; if you have been on steroids anytime within the preceding 2 months the dh biopsy will be negative.

Considering everything if the biopsy turned up positive it would be a total fluke.

GFinDC Veteran
GFinDC
Posted

Fatigue is definitely a common complaint with celiac. I agree, it doesn't go away over night. Nine months would be more like it IMHO. But people are different and some get better much faster. Others don't

If your tests are negative that doesn't mean you don't have celiac. If they are positive it does mean you have celiac. If they are negative you are left with figuring it out yourself by testing your body with a diet. The gluten-free diet. It's the only treatment anyway, so may as well do it and see what happens in 3 months or so. It doesn't matter how much money you pay doctors for more testing, they can't figure it out quicker than you can by doing the diet. And in the meantime if you are right you will begin healing your gut and body and getting better. That's a pretty good deal really.

Dugudugu Rookie
Dugudugu
Posted
  • Author

Thank you all!

After all those years being tired and now, finally thinking to have found the cause, it's hard to hold when no improvements are visible. It's like reaching the finish but not able to touch it. You made me clear to give it a loooot more time. Thank you for the support.

I'll cancel the new doc and will wait patiently for improvements.

beachbirdie Contributor
beachbirdie
Posted

Okay, here’s my story, you've a minute or two left?

The GP (he’s a good guy after all) requested celiac test based on low B12 and IgA. That test came back as following:

IgA anti-tTG (tissue transglutaminase): < 1 U/ml (negative),

IgA anti- Deamidated gliadine: 5 AE/ml (negative),

A-Endomisium: negative.

So that was a huge disappointment when these results came back. I was crying because all felt so in place if I was suffering from celiac disease.

Thanks to this forum I shortly found out that the blood test says nothing, and that even with a negative endoscopy I could still suffer from celiac disease or have a gluten sensitivity.

Thanks in advance for any help or suggestions for a newbie, and of course, thanks for reading!

You are correct, you discovered that the celiac testing they did is completely invalid. Your total IgA is LOW, and the doctor only ran IgA versions of the celiac tests. They are useless. :angry: Dumb doctors.

You have many signs that do point to celiac (not diagnosing here, not a doctor) and you should get IgG versions of celiac tests as well as biopsy, and biopsy of rash. You should also get thyroid testing. I do not see that was done. TSH, Free T3 and Free T4. Possibly thyroid antibodies (anti-TPO and anti-thyroglobulin for starters).

If gluten free makes you well, that is a strong indication for you!

Welcome aboard, by the way! :)

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Dugudugu Rookie
Dugudugu
Posted
  • Author

Thank you all.

The rash is already gone.

Will try to get the other test done. Will keep you update by the time.

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      New (possible) celiac diagnosis

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    • Judy M
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      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
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      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
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