In The Middle Of The Diagnostic Process, Help!

[mosaicmom]

Hi, new here.

Daughter, almost 17... 3 years of Walter Reed Army Medical Center shoving laxatives and fiber down my daughter, ignoring symptoms.

Finally a competent Nurse Practitioner recognized an auto-immune issue going on with respect to co-occurring asthma (gene link between Crohns-bear with me b/c I have questions) and Crohn's or Celiacs.

Going in for endoscopy later this month.

Test positive on candida, negative on PPD.

What other tests are there to use to confirm Celiacs? I need to know what to ask for.

Will it be definitive with a colonoscopy?

What damage to the internal lining do you typically see with Celiacs? Can there by nodules in the small bowel?

Also, rash similar to Celiacs has appeared only a handful of times. Thought it was metal contact related that turned into a yeast infection- responded to Nystatin. Rethinking that now. Looked like Chicken Pox the few times the severe dermatitis appeared. Most of the time, the eczema/atopic derm appeared yeast related, didn't respond to hydrocortisone, only Nystatin (as an infant).

Thanks for all your help.

I have my email open to posters. Please reply that way if you can, but I have bookmarked this page also.

[mosaicmom]

Also wanted to add that by going gluten free, symptoms have gotten 50% better in almost 2 weeks.

Severe GI issues though.

Sorry, but this disease is all about too much info (TMI)... I have to ask

Symptoms

Mental unclarity

Hair loss

Pale skin

Allergies/asthma

GI: burning, no noticable issues on barium in upper gi tract, but regurgitation still occurs

base of small bowel, food cannot pass due to large, inflamed, numerous nodules. Bowel movements are dry,flakey, and painful though water intake is above required. Alot of issues in rectal area, including thrombosed hemorrhoid, swelling, pain, perianal strep and bleeding consistently for 3 years.

Urogenital: burning sensation when urinating occasionally

Bone pain

Muscle weakness

General inanition

Weight loss

Frequent athlete's foot despite no one else in the family having it.

[Lisa]

This is the complete panel to order:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

There are 3 current methods to diagnose Celiac:

1. Blood Panel

2. Endoscopy Exam and Biopsy (small intestine)

3. Postive Dietary Response

Celiac disease can be view through an endoscopy exam. The doctor can look for scalloping of the walls and blunting of the villi. Several biopsies should be taken.

You can find information about DH here: https://www.celiac.com/categories/Dermatiti...Celiac-Disease/

Hope this helps

[mosaicmom]

  Momma Goose said:

This is the complete panel to order:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

There are 3 current methods to diagnose Celiac:

1. Blood Panel

2. Endoscopy Exam and Biopsy (small intestine)

3. Postive Dietary Response

Celiac disease can be view through an endoscopy exam. The doctor can look for scalloping of the walls and blunting of the villi. Several biopsies should be taken.

You can find information about DH here: https://www.celiac.com/categories/Dermatiti...Celiac-Disease/

Hope this helps

It does, thank you. I will write these down for the pre-op coming up next week.

Forgot to mention, swollen lymph nodes in arm pit appear about every 6 weeks, swell to varying degrees, painful, then go away- different sides.

Also, will you see any of what I mentioned happening in Celiacs?

[leeirons]

Another couple of things to consider.

If a blood test is done, and the total IgA level is below normal, you could also be dealing with an immunodeficiency, which could be associated with the swollen lymph nodes. In this case, the serum testing would not be able to determine Celiacs, because of the deficienct IgA. You can learn more about this at Open Original Shared Link. Endoscopy and biopsy is what you have left to make the determinations.

Also, some of the symptoms you describe could be a result of a thyroid deficiency. Have you tested for thyroid? You can learn more about how to do that at Open Original Shared Link.

[ravenwoodglass]

  mosaicmom said:

It does, thank you. I will write these down for the pre-op coming up next week.

Forgot to mention, swollen lymph nodes in arm pit appear about every 6 weeks, swell to varying degrees, painful, then go away- different sides.

Also, will you see any of what I mentioned happening in Celiacs?

Yes problems like the ones you mentioned can occur. Along with a lot more. The fact that she improved during a short time gluten-free is a good sign that that is what you need to do. However do not make her gluten free until after you are done with all testing. This can cause a false negative. Also be aware that testing is far from conclusive with celiac, they are mostly looking for damage that is very advanced and biopsies can be hit and miss. There are 22 ft of small intestine and if damage is patchy it can be missed. After the testing then please do a strict gluten free trial for at least a couple of months.

[mosaicmom]

  leeirons said:

Another couple of things to consider.

If a blood test is done, and the total IgA level is below normal, you could also be dealing with an immunodeficiency, which could be associated with the swollen lymph nodes. In this case, the serum testing would not be able to determine Celiacs, because of the deficienct IgA. You can learn more about this at Open Original Shared Link. Endoscopy and biopsy is what you have left to make the determinations.

Also, some of the symptoms you describe could be a result of a thyroid deficiency. Have you tested for thyroid? You can learn more about how to do that at Open Original Shared Link.

Basic thyroid levels were fine both through conventional blood test, and through an acupuncturist using a skin iodine test.

I've heard levels can be completely normal and yet still have a problem.

My mother deals with severe thyroid issues, and they do test my daughter.

So far, it's anemia and minor malabsorption showing up. It's going to increase b/c her appetite is gone. I'm trying to replenish as best I can.

[mosaicmom]

Ravenwood,

I'm most interested in your sig line. I hope I'm not out of line but I'd like you ask you some questions. If they're personal, please pm me if you'd like to answer but find this is not appropriate. I'm finding this to be an enormous help.

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission with proper diagnosis of Celiac November 2002

Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Was the depression considered major depression where mood stabilizers were prescribed? Not SSRI's

On further inquiry in looking at her last night due to the link offered, she most definitely has dematitis herpeformis. No question about it. major anxiety, migranes, hairloss, muscle cramping and severe back pain. Renaud's phenominon could be the nerve damage too- hands and feet, swelling and numbness very frequently.

In not knowing what some of definitions are above, I can't compare... will look into if they fit her complaints.

Also, bought whey protein but was warned previously about casiens. Is this common in conjunction with Celiacs? Haven't opened the power yet (for smoothies) and it was $50. Don't want to waste it if there's even a slight chance.

Is there food allergy testing? I've read yes and no. Exact names of test if there is one?

[leeirons]

  mosaicmom said:

Basic thyroid levels were fine both through conventional blood test, and through an acupuncturist using a skin iodine test.

I've heard levels can be completely normal and yet still have a problem.

My mother deals with severe thyroid issues, and they do test my daughter.

So far, it's anemia and minor malabsorption showing up. It's going to increase b/c her appetite is gone. I'm trying to replenish as best I can.

Being young, your daughter could possibly have Hashimoto's Thyroiditis, and have her TSH and Free T4 still look nomal, which are the only two tests that most doctors do. With Hashi's, her hormones could be jumping around, and you just happened to catch them on a good day. If your daughter gets a Celiacs diagnosis, your should get the thyroid more closely examined by testing for TPO Antibodies and TG antibodies. Also, if either free T3 is not high enough or if reverse T3 is too high, this could cause symptoms, even if TSH and T4 are fine. So your doctor should test these at the same time as the antibodies are tested. This is not a thyroid forum so you should check out my link above to get more information on all of this. I am on that forum, so I (and others) can talk to you more about it, there.

[mosaicmom]

  leeirons said:

Being young, your daughter could possibly have Hashimoto's Thyroiditis, and have her TSH and Free T4 still look nomal, which are the only two tests that most doctors do. With Hashi's, her hormones could be jumping around, and you just happened to catch them on a good day. If your daughter gets a Celiacs diagnosis, your should get the thyroid more closely examined by testing for TPO Antibodies and TG antibodies. Also, if either free T3 is not high enough or if reverse T3 is too high, this could cause symptoms, even if TSH and T4 are fine. So your doctor should test these at the same time as the antibodies are tested. This is not a thyroid forum so you should check out my link above to get more information on all of this. I am on that forum, so I (and others) can talk to you more about it, there.

Sure, give me a day or so. I wouldn't even know what to ask for. I guess I'll lurk around info relating to Hashimoto's.

Thank you for the reference point in which to start.

I'm taking notes.

[mftnchn]

This is all great advice and a good place to start.

With celiac there can be many co-occurring autoimmune or other issues. So if she doesn't fully respond when you do go gluten free, keep asking questions here. There are many other things various folk have found helpful.

[wildwood]

This is my first time I am making an entry on the forum. I have been reading all of the information on the forum for the past few weeks. My daughter was dx'd as possibly having celiac disease in early August. Her gliadin IGG/IGA came back a 91 (normal range <45) and her Transgutaminase IGA 233 (normal <20). She had two endoscopies. The first was before labs came back and was deemed normal "with no endoscopic explanation for patient's symptoms". Once the labs came in, the endoscopy was repeated and biopsies done. These came back negative.

The next test that was done was a G.I./G.U. Small Bowel Only. I have not seen this test mentioned anywhere in regards to diagnosing celiac and I hope it is helpful informatin for you mosaicmom. The result came back "area of abnormality in likely distal jejunum consisting of rounded areas of hypertrophy in the lumen surrounded by barium. This has a mosaic pattern" Impession: findings concerning for sprue in the jejunum as described. Crohn's disease felt to be less likely.

Does anyone else have any thoughts on this testing? In your opinion does this confirm dx of celiac? My daughter had to leave for college the end of August so we will not be going back to GI until November when she returns for break.

I hope I did not give too much information!

[ShayFL]

Everyone in this forum that I have seen, who tested POS with bloodwork responded POS to the gluten-free diet. Some doctors would dx Celiac with those two (POS blood and POS response to the diet). It maybe that the damage is not significant yet. Thank goodness!!! She has a chance to save herself a world of misery and auto-immune diseases, infertility and lymphoma.

It it were me, based on what I know, I would say yes.....Celiac.

[wildwood]

  ShayFL said:

Everyone in this forum that I have seen, who tested POS with bloodwork responded POS to the gluten-free diet. Some doctors would dx Celiac with those two (POS blood and POS response to the diet). It maybe that the damage is not significant yet. Thank goodness!!! She has a chance to save herself a world of misery and auto-immune diseases, infertility and lymphoma.

It it were me, based on what I know, I would say yes.....Celiac.

Thanks, I know you are right. I know deep down that she is celiac. She has been trying to adhere to a gluten free diet, but it is quite a learning curve. Especially difficult because she had to leave for her first year of college so soon after her test results came back. I wish I could have had more time with her to help her through this process. She does call me often with questions. She is so busy with school work I have been checking things out for her, but I am impressed by how she has educated herself in things relating to gluten and celiac. The only time she has had gluten has been by accident while she is learning. It seems that each time she feels sick alot sooner than she used to so I would say this is a pretty definitive indicator that she is celic.

[Lisa]

  WILDWOOD said:

This is my first time I am making an entry on the forum. I have been reading all of the information on the forum for the past few weeks. My daughter was dx'd as possibly having celiac disease in early August. Her gliadin IGG/IGA came back a 91 (normal range <45) and her Transgutaminase IGA 233 (normal <20). She had two endoscopies. The first was before labs came back and was deemed normal "with no endoscopic explanation for patient's symptoms". Once the labs came in, the endoscopy was repeated and biopsies done. These came back negative.

The next test that was done was a G.I./G.U. Small Bowel Only. I have not seen this test mentioned anywhere in regards to diagnosing celiac and I hope it is helpful informatin for you mosaicmom. The result came back "area of abnormality in likely distal jejunum consisting of rounded areas of hypertrophy in the lumen surrounded by barium. This has a mosaic pattern" Impession: findings concerning for sprue in the jejunum as described. Crohn's disease felt to be less likely.

Does anyone else have any thoughts on this testing? In your opinion does this confirm dx of celiac? My daughter had to leave for college the end of August so we will not be going back to GI until November when she returns for break.

I hope I did not give too much information!

Wildwood,

You daughter has recieved a positive diagnosis through her blood work, which doesn't need to be supported by an endoscopy exam. She does have Celiac.

You daughter may have been lucky to have been diagnosed before any considerable damage was done. (Although, a barium test is does not diagnose).

[wildwood]

  Momma Goose said:

Wildwood,

You daughter has recieved a positive diagnosis through her blood work, which doesn't need to be supported by an endoscopy exam. She does have Celiac.

You daughter may have been lucky to have been diagnosed before any considerable damage was done. (Although, a barium test is does not diagnose).

You and ShayFL are absolutely right. It looks as though we have caught this before alot of damage was done and the blood test was done on a whim!!! All the doctors she had seen to this point had told her it was stress and that is the direction the GI was going also. I don't know what made her GI decide to order celiac panel, but I am grateful she did. I really would never have known to ask for celiac panel. We are extremely fortunate.