Dh And Now Milk Protein Allergy

[valerieanne]

My daughter was diagnosed with DH by a dermatologist five years ago, based on a 'textbook presentation'. No bloodwork, no biopsy, just put on a gluten-free diet immediately. She had lesions from between her fingers, all the way up the back of her arms, to her shoulders. Watery blisters, itchy, painful during healing. Her elbows are heavily scarred from that one bad episode five years ago.

Six weeks after her DH diagnosis (and being gluten-free), her paediatrician ran bloodwork, which was negative for celiac disease. She was borderline anemic, but that was 'her normal'. I tested strong positive for celiac disease. This was enough to confirm my daughter's diagnosis for the paediatrician. No scopes or gi biopsies for either of us. Yes, we both had life-long gi issues, which have mostly cleared up while gluten-free.

We've moved. Her new doctor decided to do a stool test, after daughter's bloodwork came back as 'slightly anemic'. She tested positive for moderate microscopic blood in her stool. She is now on a dairy elimination diet for three weeks, due to a suspected milk protein allergy. She is questioning the DH diagnosis, as there are no bloodwork or biopsy results. She's got me wondering now, too.

1. Was the physical exam and my positive blood test enough for a reliable DH diagnosis in daughter?

2. Was my strong positive even enough for a reliable celiac disease diagnosis in me?

3. What are the experiences of DH patients who have undergone a gluten challenge?

TIA

[GottaSki]

Welcome Valarie and daughter!

 

1) yes, in my experience and knowledge of numerous reports.  would wait for those more knowledgeable than I with regard to DH to chime in.

 

2) Absolutely - Yes.

 

3) Again...I'll wait for those with direct experience to add their expertise.

 

The only words of comfort I can add...you have experienced improvement gluten free.  This is a large part of the diagnostic puzzle that many doctors dismiss, but should never be dismissed.

 

I know others will be along..hang in there

[cyclinglady]

I do not have DH, but I understand that even an accidental glutening can bring DH back with a vengeance. Others here have described it as hellish and far worse and taking longer to heal than intestinal symptoms. I can not imagine subjecting a child to a challenge like that. Are you even willing to do a challenge? I would not!

My blood test was mildly positive but my biopsy was moderate to severe. My only symptom was anemia. A few months and a fracture later, I was diagnosed with osteoporosis and osteopenia. Your strong positive result more than likely meant damage to your intestinal tract. Many folks here are just diagnosed just using the blood test. Others by diet alone. The proof is in improved health.

Again, I am trying to grasp the concept of making myself sick, just to appease one doctor who is not a celiac specialist. The original doctor who diagnosed her was an MD. You can not completely discount his knowledge.

I am sure others will chime in. I urge you to do more research before subjecting your daughter to a challenge. I understand the importance of a solid diagnosis, but when DH is involved.....

BTW, i am allergic to casein and whey. Milk can damage the intestinal tract too. Check out the University of Chicago's celiac website. Knowledge is power!

[valerieanne]

Thanks, ladies.

I am very hesitant to do the gluten challenge. We started one on ds2 last June, but had to quit within five days due to vomiting, rash and diarhhea. The thought of another scarring episode for dd, in addition to the gi pain... No, we'll skip it. If she wants to do one when she's older, we'll revisit the idea of a gluten challenge.

Restricting another thing (dairy) from her diet is just so frustrating. I guess I'm trying to abracadabra a way out of it by questioning the diagnostics. On the upside, I've requested a genetic test for dd after reading through threads. I'm learning. Yes, five years later, still learning.

ETA: I meant to say that I am requesting a genetic test for DS. The paediatrician wants a diagnosis on him too, but the gluten challenge last year was too much.

[squirmingitch]

Thanks, ladies.

I am very hesitant to do the gluten challenge. We started one on ds2 last June, but had to quit within five days due to vomiting, rash and diarhhea. The thought of another scarring episode for dd, in addition to the gi pain... No, we'll skip it. If she wants to do one when she's older, we'll revisit the idea of a gluten challenge.

Restricting another thing (dairy) from her diet is just so frustrating. I guess I'm trying to abracadabra a way out of it by questioning the diagnostics. On the upside, I've requested a genetic test for dd after reading through threads. I'm learning. Yes, five years later, still learning.

I am so glad to hear you will not do the challenge! I can't even express HOW glad. Nothing in this world could make me go through a gluten challenge --- NOTHING! I truly would rather die first. I came close to killing myself with the dh --- no way, no how would I recommend a challenge to anyone who has dh. GottaSki & cyclinglady both were right in their responses to you & I agree with all they said.

I know cutting dairy is rough, real rough but it sounds like she's a tough girl. She'll make it. There are substitutes. ((((HUGS)))))