I just need help! Test results and history included.

[TMB-EMB]

Hello all,

I'm literally losing my mind with my daughter's health. She has had testing done and I'm attaching that information as well. Any help will be greatly appreciated and please feel free to ask any questions necessary.

Her general symptoms are….

1.       deep sores on her arms and legs (10 or 12 total at a time) which last for two or three weeks before clearing up. These are usually after eating consuming a large amount of bread or pasta.

2.       Severe chronic constipation – she’s been hospitalized 4 times for a week each time to clean her out. The first hospitalization was at 1.5 years old then, 3 years old, 4 years old, and again at 6 years old. She was treated with her first Rx constipation medication at 5 weeks old. She was on miralax (Rx by her pediatrician) for almost two and a half years.

3.       Small bumps on her upper arms, since birth.

4.       40 lbs overweight

5.       Flaky scalp, but in sections, not all at one time. They start out looking like a sun burn and within a couple of days they peel off leaving her hair full of dead skin.

6.       Bloating and distended stomach – ALWAYS

7.       Joint pain

8.       Irritability, large mood swings, anxiety

9.       Mouth ulcers constantly and several cavities over the years.

I pulled her off all wheat products in February and she lost 13 lbs in 6 weeks, however, the pediatrician made me feel bad about taking wheat products from her without diagnostic testing. I gave it back and she started complaining of stomach pain and was doubled over crying within 20 or so minutes. She continued to eat it and the pain eventually subsided. Now that they’ve done their testing, her pediatrician says she’s not wheat or gluten sensitive, but does see that her values have increased since the last blood allergy testing 2 years ago.

She saw a Registered Dietitian this past Thursday and she told me that I could take her off gluten products, but threw in “if it will make you feel better.” Now I’m at a complete loss and don’t have a clue what to do.

INTERPRETATION
Specific Level of Allergen IGE Class kU/L Specific IGE Antibody ----- --------- ------------------- 0 <0.10 Absent/Undetectable 0/1 0.10-0.34 Very Low Level 1 0.35-0.69 Low Level 2 0.70-3.49 Moderate Level 3 3.50-17.4 High Level 4 17.5-49.9 Very High Level 5 50-100 Very High Level 6 >100 Very High Level The clinical relevance of allergen results of 0.10-0.34 kU/L are undetermined and intended for  specialist use.

 

 

 

 

 

 

 

 

 

 

 

 

Egg White (F1) IgE	0.35 kU/L
Class	1
Wheat (F4) IgE	0.14 kU/L
Class	0/1
Milk (F2) IgE	0.13 kU/L
Class	0/1

IGE

57 kU/L

<OR=304 kU/L

Component	Your Value	Standard Range
T4 Free	1.2 ng/dL	0.9 - 1.4 ng/dL

Component	Your Value	Standard Range
INTERPRETATION	SEE NOTE
No serological evidence of celiac disease. tTG IgA may normalize in individuals with celiac disease who maintain a gluten-free diet. Consider HLA DQ2 and DQ8 testing to rule out celiac disease. Celiac disease is extremely rare in the absence of DQ2 or DQ8.
TISSUE TRANSGLUTAMINASE AB, IGA	<1 U/mL	U/mL
<4 No Antibody Detected > OR = 4 Antibody Detected
Immunoglobulin A	165 mg/dL	41 - 368 mg/dL

In addition – her red blood cell count was slightly out of range and her platelet count was at the very top of the high end of the range.

I’ve also had a hair allergy test done (although I do realize the medical community does not consider these valid).

Cornflakes -A breakfast cereal made with toasted flakes of corn. This does not include all maize/corn products,

it is the cereal only. - 87%

E 101 Riboflavin - Yellow food coloring. Used in various products. - 99%

E 1420 Acetylised starch (modified starch) - Thickening agent in many products - 95%

E 163 Anthocyanins - Found in black cherry yogurt, dairy products, glacé cherries, ice cream, jellies, pickles, soft drinks,

tomato, carrot or vegetable soups and sweets. - 100%

E 471 Mono- and diglyceride - It is used in cake mixes and oven ready chips. For use in baked goods, including extensive use in bread and all types of dairy foods, margarine and ice cream. Also used extensively in bread and wheat based bakery goods, which give the home baked taste. - 96%

E 629 Calciumguanylate, Guanylate - Used in many products, mainly in low-salt/sodium products. - 86%

E 953 Isomalt - Sweetener found in boiled sweets, toffee, lollipops, fudge, wafers, cough drops, throat lozenges,

and a wide variety of other products. - 89%

Margarine - Margarine is a processed food that is designed to taste and look similar to butter and is a spread

used for flavouring, baking, and cooking. - 87%

Quince - Similar to the pear in appearance, usually golden-yellow when mature. - 86%

Sole - Edible flat fish. - 99%

Wheat - A cereal grain. - 100%

White pepper - Spice made from white peppercorns. - 90%

Thanks for your time and help!

[cyclinglady]

Welcome!  

I am so sorry that your daughter is unwell.  

Your daughter had the screening celiac test (TTG IgA), but was not given the entire panel.  Even though she is not Immunoglobulin A (IGA) deficient, some celiacs (like me) do not test positive to the TTG.  The DGP (IgG and IgA) versions should be given, in my opinion.  They are consider better for young children (not sure of your daughter’s age).  My diagnosis would have never been caught if my GI had not ordered the complete celiac panel.  If your PED resists, consider asking for the genetic testing or push for a Gastroenterologist consult.  

How long did she consume gluten daily before this TTG IgA test was given?  Your daughter should have been consuming gluten daily for about 8 to 12 weeks.  It can take that long for antibodies to build up in the bloodstream.  Maybe her gluten challenge was too short!  

The hair allergy testing is....not very accurate.  Snake oil in my opinion.    Best to actually do skin testing a year a board certified allergist.  Remember, celiac disease is autoimmune and not technically an allergy (IgE), but is under the hypersensitivity umbrella. 

Keep researching.  Please confirm that she had a long gluten challenge prior to her celiac test.  

Edited June 23, 2019 by cyclinglady

[TMB-EMB]

Thank you for your reply. She was back on gluten for approximately 9 weeks prior to the test. The gastro doctor can’t see her until October 2nd and the allergist that the dietician suggested can’t see her until September. I simply cannot wait that long to figure something out. Any other suggestions are appreciated.

[cyclinglady]

You are in a tough spot.  Can the PED order the rest of the panel?  Sometimes you can order the celiac panel from an online lab but I think it depends on your state.  

She might not have celiac disease.  Have you researched Non-Celiac Gluten Sensitivity?  Unfortunately, that diagnosis is often made after firmly ruling out celiac disease.  Learn more about NCGS:

https://www.scientificamerican.com/article/gluten-sensitivity-may-be-a-misnomer-for-distinct-illnesses-to-various-wheat-proteins/?redirect=1

You could trial the gluten free diet until you see the GI.     No eating out.  Avoid processed foods and limit sugar which is not good for anyone in my non-medical opinion.  A food journal can help identify food intolerances.  

If your GI orders an endoscopy, she will have to go back on gluten for two weeks prior to the procedure.  

I hope she feels better soon.  

Edited June 24, 2019 by cyclinglady

[Ennis-TX]

In addition to cycling ladies info, the constipation is something I had growing up, mine is believed to have partially due to magensium deficiency. I started taking Natural Vitality Calm, you have to dose to tolerance with it, IE start off at 1/4tsp (2g) a day and up the dose 2g each day til she gets loose stools then take the dose down 2grams. It will help to maintain normal BMs, as I healed I have significantly lowered my dose. Might try it instead of the miralax.

She does sound like it could be Celiac, but scopes should give a clearer picture of what is going on.

I wanted to say if you can not get a full blood panel ordered from the doctors you can try the following which uses DGP IgA, tTg like Iamaware https://imaware.health/celiac-disease/at-home-monitoring-test/

There are a few other at home test that use tTg and EMA https://www.letsgetchecked.com/us/en/home-celiac-test/

Each have their own merits but both will require about 12 week gluten challenge.

IgA Endomysial antibody (EMA): The EMA test has a specificity of almost 100%, but is not as sensitive as the tTG-IgA test. About 5-10% of people with celiac disease do not have a positive EMA test. It is also very expensive in comparison to the tTG-IgA and requires the use of primate esophagus or human umbilical cord. It is usually reserved for difficult to diagnose patients.

Total serum IgA: This test is used to check for IgA deficiency, a condition associated with celiac disease that can cause a false negative tTG-IgA or EMA result. If you are IgA deficient, your doctor can order a DGP or tTG-IgG test.

Deamidated gliadin peptide (DGP IgA and IgG): This test can be used to further screen for celiac disease in individuals with IgA deficiency or people who test negative for tTg or EMA antibodies.
While it is very rare, it is possible for someone with celiac disease to have negative antibody test results. If your tests were negative, but you continue to experience symptoms, consult your physician and undergo further medical evaluation.

[TMB-EMB]

Thank you for the information. The Pediatrician has declined to do further testing stating the gastro would need to continue to follow this search for a diagnosis. Since we can't see them until October, they are making it a little difficult for me. 

One thing I should have mentioned the first time and completely forgot to add is that when she was 6 years old, during one of her hospital stays, they did 17 biopsies from her esophagus through her rectum and the doctors quote was, "all we found was unexplained inflammation".  

[Posterboy]

On 6/23/2019 at 12:24 PM, TMB_EMB said:

I'm literally losing my mind with my daughter's health. She has had testing done and I'm attaching that information as well. Any help will be greatly appreciated and please feel free to ask any questions necessary.

Her general symptoms are….

1.       deep sores on her arms and legs (10 or 12 total at a time) which last for two or three weeks before clearing up. These are usually after eating consuming a large amount of bread or pasta.

2.       Severe chronic constipation – she’s been hospitalized 4 times for a week each time to clean her out. The first hospitalization was at 1.5 years old then, 3 years old, 4 years old, and again at 6 years old. She was treated with her first Rx constipation medication at 5 weeks old. She was on miralax (Rx by her pediatrician) for almost two and a half years.

3.       Small bumps on her upper arms, since birth.

4.       40 lbs overweight

5.       Flaky scalp, but in sections, not all at one time. They start out looking like a sun burn and within a couple of days they peel off leaving her hair full of dead skin.

6.       Bloating and distended stomach – ALWAYS

7.       Joint pain

8.       Irritability, large mood swings, anxiety

9.       Mouth ulcers constantly and several cavities over the years.

I pulled her off all wheat products in February and she lost 13 lbs in 6 weeks, however, the pediatrician made me feel bad about taking wheat products from her without diagnostic testing. I gave it back and she started complaining of stomach pain and was doubled over crying within 20 or so minutes. She continued to eat it and the pain eventually subsided. Now that they’ve done their testing, her pediatrician says she’s not wheat or gluten sensitive, but does see that her values have increased since the last blood allergy testing 2 years ago.

Tmb,

I think Ennis_Tx has given you good advise on the constipation.

This is mainly about the constipation issue's but it is also about how Miralax can be causing the constipation . ..it is designed to treat.

See this link about Miralax...it really is not a good medicine for children (IMHO).

https://www.gutsense.org/gutsense/the-role-of-miralax-laxative-in-autism-dementia-alzheimer.html

I had trouble/constipation as a kid too ...I found taking Colace or Pericolace easy on my stomach and when I got older (an adult) I found out about Magnesium... how taking Magnesium Citrate is an easy, natural laxative.

these are common nutrients you child might be low in.

https://medicalxpress.com/news/2019-06-micronutrient-deficiencies-common-celiac-disease.html

I suspect Magnesium should be on that list too ...but it is very hard to measure so it is not often reported to be low ...but if your stomach acid is low enough to be low in Iron and Vitamin D ....your child is probably low in Magnesium as well.

Take a good B-complex, Colace, Magnesium Citrate, Vitamin D and stop the Miralax to see if any of these things  help...I found they all helped me.

The mouth ulcers will probably respond to Lysine ...I used to  have them all the time...when my stomach acid got better so did my mouth ulcers.

this article has a lot easy simple ways for you to check this hypothesis.

https://drjockers.com/5-ways-test-stomach-acid-levels/

the constant bloat ...to me a clue. ...I had similar problems as a kid...I could never finish my meals.

I wrote about my experience of going many, many years (into adulthood) not knowing my stomach acid was low all these years...in this blog post.

I hope it helps you are someone else still suffering ...I can only say it helped me.

This is not medical advise but it what I have learned by studying on this topic for a few years and what makes the most sense to me.

Good luck on your continued journey and I hope your Kiddo feels better soon!

I was that Kid 30+ years ago and one of the main reasons' I still participate today...though it is less than it used to be...but when I see me 30 years ago in a post/another user...I feel moved to shared.

Again this is not medical advise but I hope it is helpful.

2 Timothy 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included

Posterboy by the grace of God,

[TMB-EMB]

Thank you! I will definitely read your post. I should clarify that I pulled her off the Miralax about 2 years ago. I’m sorry if that wasn’t clear. I just didn’t want her taking it any longer and/or her body becoming dependent on it. 

[Iiv]

On 6/23/2019 at 7:24 PM, TMB_EMB said:

 

INTERPRETATION
Specific Level of Allergen IGE Class kU/L Specific IGE Antibody ----- --------- ------------------- 0 <0.10 Absent/Undetectable 0/1 0.10-0.34 Very Low Level 1 0.35-0.69 Low Level 2 0.70-3.49 Moderate Level 3 3.50-17.4 High Level 4 17.5-49.9 Very High Level 5 50-100 Very High Level 6 >100 Very High Level The clinical relevance of allergen results of 0.10-0.34 kU/L are undetermined and intended for  specialist use.

 

 

 

 

 

 

 

 

 

 

 

 

Egg White (F1) IgE	0.35 kU/L
Class	1
Wheat (F4) IgE	0.14 kU/L
Class	0/1
Milk (F2) IgE	0.13 kU/L
Class	0/1

IGE

57 kU/L

<OR=304 kU/L

 

IgE is the common allergy antibody. IgE is not associated with celiac disease, but hayfever, dust, nuts, animals etc. It is antibodies attacking intruders, not like ttg-IgA which are autoantibodies attacking the body's own cells instead. 

In some countries, like Sweden, the reference range is >0.10. Anything above that is considered to have potential to cause issues. 

Some references might still be >0.34, like pollen. 

But when it comes to insects, wheat, egg they have lowered the range long ago. Probably because of people like your daughter, who is struggling with obvious allergic reactions but are still within the range. 

According to the results, her body is producing antibodies towards egg white more than to wheat. But her body is also producing antibodies towards wheat and milk. 

Not much, yet anyway. But apparently enough to cause her a lot of discomfort.

⚠ ? The elevated results for milk is for the protein. It has nothing to do with lactose!!! ? ⚠ 

This does still not rule out an autoimmune disease, whether it is celiac or IBD (like colitis). Just that your daughter does not have those autoantibodies they tested for now, like mentioned in other posts. 

[Agent0124]

On 6/23/2019 at 1:24 PM, TMB_EMB said:

Hello all,

I'm literally losing my mind with my daughter's health. She has had testing done and I'm attaching that information as well. Any help will be greatly appreciated and please feel free to ask any questions necessary.

Her general symptoms are….

1.       deep sores on her arms and legs (10 or 12 total at a time) which last for two or three weeks before clearing up. These are usually after eating consuming a large amount of bread or pasta.

2.       Severe chronic constipation – she’s been hospitalized 4 times for a week each time to clean her out. The first hospitalization was at 1.5 years old then, 3 years old, 4 years old, and again at 6 years old. She was treated with her first Rx constipation medication at 5 weeks old. She was on miralax (Rx by her pediatrician) for almost two and a half years.

3.       Small bumps on her upper arms, since birth.

4.       40 lbs overweight

5.       Flaky scalp, but in sections, not all at one time. They start out looking like a sun burn and within a couple of days they peel off leaving her hair full of dead skin.

6.       Bloating and distended stomach – ALWAYS

7.       Joint pain

8.       Irritability, large mood swings, anxiety

9.       Mouth ulcers constantly and several cavities over the years.

I pulled her off all wheat products in February and she lost 13 lbs in 6 weeks, however, the pediatrician made me feel bad about taking wheat products from her without diagnostic testing. I gave it back and she started complaining of stomach pain and was doubled over crying within 20 or so minutes. She continued to eat it and the pain eventually subsided. Now that they’ve done their testing, her pediatrician says she’s not wheat or gluten sensitive, but does see that her values have increased since the last blood allergy testing 2 years ago.

She saw a Registered Dietitian this past Thursday and she told me that I could take her off gluten products, but threw in “if it will make you feel better.” Now I’m at a complete loss and don’t have a clue what to do.

INTERPRETATION
Specific Level of Allergen IGE Class kU/L Specific IGE Antibody ----- --------- ------------------- 0 <0.10 Absent/Undetectable 0/1 0.10-0.34 Very Low Level 1 0.35-0.69 Low Level 2 0.70-3.49 Moderate Level 3 3.50-17.4 High Level 4 17.5-49.9 Very High Level 5 50-100 Very High Level 6 >100 Very High Level The clinical relevance of allergen results of 0.10-0.34 kU/L are undetermined and intended for  specialist use.

 

 

 

 

 

 

 

 

 

 

 

 

Egg White (F1) IgE	0.35 kU/L
Class	1
Wheat (F4) IgE	0.14 kU/L
Class	0/1
Milk (F2) IgE	0.13 kU/L
Class	0/1

IGE

57 kU/L

<OR=304 kU/L

Component	Your Value	Standard Range
T4 Free	1.2 ng/dL	0.9 - 1.4 ng/dL

Component	Your Value	Standard Range
INTERPRETATION	SEE NOTE
No serological evidence of celiac disease. tTG IgA may normalize in individuals with celiac disease who maintain a gluten-free diet. Consider HLA DQ2 and DQ8 testing to rule out celiac disease. Celiac disease is extremely rare in the absence of DQ2 or DQ8.
TISSUE TRANSGLUTAMINASE AB, IGA	<1 U/mL	U/mL
<4 No Antibody Detected > OR = 4 Antibody Detected
Immunoglobulin A	165 mg/dL	41 - 368 mg/dL

In addition – her red blood cell count was slightly out of range and her platelet count was at the very top of the high end of the range.

I’ve also had a hair allergy test done (although I do realize the medical community does not consider these valid).

Cornflakes -A breakfast cereal made with toasted flakes of corn. This does not include all maize/corn products,

it is the cereal only. - 87%

E 101 Riboflavin - Yellow food coloring. Used in various products. - 99%

E 1420 Acetylised starch (modified starch) - Thickening agent in many products - 95%

E 163 Anthocyanins - Found in black cherry yogurt, dairy products, glacé cherries, ice cream, jellies, pickles, soft drinks,

tomato, carrot or vegetable soups and sweets. - 100%

E 471 Mono- and diglyceride - It is used in cake mixes and oven ready chips. For use in baked goods, including extensive use in bread and all types of dairy foods, margarine and ice cream. Also used extensively in bread and wheat based bakery goods, which give the home baked taste. - 96%

E 629 Calciumguanylate, Guanylate - Used in many products, mainly in low-salt/sodium products. - 86%

E 953 Isomalt - Sweetener found in boiled sweets, toffee, lollipops, fudge, wafers, cough drops, throat lozenges,

and a wide variety of other products. - 89%

Margarine - Margarine is a processed food that is designed to taste and look similar to butter and is a spread

used for flavouring, baking, and cooking. - 87%

Quince - Similar to the pear in appearance, usually golden-yellow when mature. - 86%

Sole - Edible flat fish. - 99%

Wheat - A cereal grain. - 100%

White pepper - Spice made from white peppercorns. - 90%

Thanks for your time and help!

My goodness, you are very dedicated. I went through a lot of very similar things. I am ANA negative, and every blood test they ran never indicated celiac....... neither did either of my daughters....... but the blood test is a tool, not an absolute. I had a very wonderful gp. He told me the best test for it is to come off of Gluten for 6-8 weeks . My doctor couldn’t believe the difference. Eventually I ended up getting an excellent gastro. He said that the fact that I have to keep a separate maternity wardrobe and that I have DH, you don’t get DH without it being celiac. 
My allergy blood tests came back fine, but the allergist who did the very basic scratch test..... not allergic to wheat it’s self ( just the gluten In it) was allergic to corn, oat, almond, cod, shrimp, shellfish, strawberries, carrots.....etc   Etc. 

 

        I later found another celiac who told me the most ridiculous thing... I didn’t believe it because it was so crazy. I’ll include it at the bottom. I have found it to be very true. I have a very severe form of celiac, I cannot even be around it cooking because inhaling it will lay me out and blow me up. I call it hulking out because I swell so fast ( abt 15 mins or so) that I pop buttons, rip seams, and blow zippers the condition is so bad. But It was negative or didn’t indicate on my bloodwork. My children are not quite as severe, but both get that rash and very sick with it.  My platelets are always high, and her bloodwork looks similar to mine. I have a slew of other health issues so please just let me recommend this to you.....

#1 change her doctor!!!! Medicine is a practice, and no two people are the same. 
 

#2 pull that baby off gluten. The dr doesn’t live with you and I really believe in mother’s intuition. You know your child better than anyone else. Wheat barley spelt rye look up the hidden names like maltodextrin. There should be a list. And I’d pull the whole household off of it because cross contamination is unbearably easy to do. 
 

#3 give her an ancestry dna test. Has to be from ancestry. When the results are in, google how to download raw dna data. Upload the file into promethese database ( free) and also genetic genie. It’s not the entirety of everything but it is a good start.  
 

 

Best of luck and I hope this will help. I was misdiagnosed 25+ times before realizing it was celiac. Don’t give up. Also read this article. They knew that this indicated celiac in 1970, and most doctors have not heard about it. It is peer reviewed and on the national institute of health library site. 
 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1820184/

[cyclinglady]

@Agent0124

Wow!  How funny about the lack of clear fingerprints and the possible correlation with celiac disease.  I do not have enough prints and I have been fingerprinted by many government agencies.  I thought it was due to lots of cleaning.  Despite having healed (repeat biopsy confirmed), I think I still have fingerprint issues.  I can not use that feature on my phone!  

I do not agree necessarily with the DNA testing as about 30% of the population carries the genes that could (not will) develop into celiac disease.  It is normally used to exclude celiac disease.  (Like a first-degree relative who does not want to get tested every few years for celiac disease.)

I do agree about moms knowing their kids!  

Your story is amazing.  DH is celiac disease.  Celiacs who have DH often do not test well on the blood panel.  I am sorry that you went through so much!  Keep sharing your story.  I bet there are tons of DH sufferers who do not have a celiac disease diagnosis!  

[NNowak]

What a horribly frustrating experience for you and your daughter. I’m very sorry. Mom’s do know best. 
 

I have 3 sisters. I was diagnosed 25 years ago with some positive antibodies and a biopsy that showed blunting of the villi. Regrettably, I had complete trust in the Dr and didn’t get copies of the tests. One of my sisters had stomach issues like I had, so she was tested and diagnosed. The other two sisters fluctuated in weight and had issues with constipation. Of those sisters, one was diagnosed with Hashimoto’s and went on a gluten-free diet at the advice of her physician - subsequently her irritable bowel and body migraines resolved. She hasn’t been tested for Celiac, but has a daughter that was diagnosed. The other sister has not been tested (despite being a NP) but is on a gluten-free DF diet since her daughter was diagnosed Celiac - her constipation has resolved. 
 

My oldest son was diagnosed at 14 months when it was determined he was immune deficient. The pediatrician told me to accept the fact he would die before age 9 - after he accused me of being a hysterical parent  ? If that doesn’t motivate a mother bear, nothing will!!  My son is now 21 and very healthy, outgrowing the cyclic neutropenia by 4th grade. A mother knows best. 
 

My advice to you is to order a celiac panel online. The University of Chicago has a pediatric Celiac Disease department. Another Celiac program is the University of Maryland. Perhaps contacting them with your daughters symptoms would give you direction or answers. It may not be Celiac, but there’s something going on that needs attention now, not several months from now. 
 

Keep pushing. You are your daughters advocate.