Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

Archived

This topic is now archived and is closed to further replies.

MichMoo's mom

Not Sure What The Next Step Is

Recommended Posts

I have been reading this website since May and using other internet websites to guide my daughter. I cried when I actually was able to log on a few days ago.I am sure I cried from relief and frustration . It has been a rough year and at times I feel that this nightmare is never going to end. Huge hugs to those who post their advice.

My child has been complaining of cold hands, dizziness, vomiting, nausea, severe headaches, tonsillitis, tingling in her hands, and fatigue for the last three years. Her CBC shows she is anemic ,29 HCT. The Docotor said she is a menstrating female so she dismissed the low count.

Everything blew up this past winter. SHe again had tonsillitis , nausea and vomiting for weeks.The docotor said she had a virus but her tonsils were oozing and kissing. SHe then developed hematuria and spent a night in the Er since she was unable to stop vomiting. THe Hospital staff asked me if I had any questions as they removed her IV, "Yes what do I do when this starts again"? The resident, intern and Nurse were silent.

In MAy I was called and told that her IGG was 19 and that she has celiac disease. I asked if I needed to see an Gi specialist but was told to see a dietician. I immediately placed her on a gluten free diet.

Within a month her color improved and she no longer looked bloated. She ate a bagel and a day later was back to the headaches, vomiting and dizziness. She said the bagel was delicious but she will never eat one again .

I sent her off to college with guidelines and two books: Living gluten free for dummies and the gluten-free Diet.

It has been really difficult cause she lives at the health center. I think she finally gets that she is still eating gluten contaminated food { choclate milk}and that is why she has lost weight and again with huge swollen tonils.

We jsut saw two otolarnygologists to see about a tonsillectomy.

I called the physician whose staff told me she has celiac to find out her exactlab results.

They are saying that she may have celiac and Her IGG is 19. "What is normal?" " up to 11 is the normal"

It has been a really tough year . They want her to see a GI specialist and have the endoscopy done.

NO WAY. I have spent many nights holding her and emptying her trash to know she will not tolerate gluten. It use to be that she would react in two to three days after cheating but now the symptoms appear in an hour or two depending on the meal. She has gotten better but has eaten contaminated food such as sushi. The cafeteria adds wheat to their rice to make it stick.

What would you do? Do I need more blood work? Do I need to spend another 800 seeing a physician.

I have only been given one number an IGG of 19.

Share this post


Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


She needs to get into the colleges Disability Office and talk to them. Celiac is covered under the ADA. The college needs to make sure she has safe food. In my daughters case they put her in senior housing so she could have her own little kitchenette and let her opt out of the meal plan. At the least she should be allowed her own toaster, microwave, hot plate and dorm size fridge. As to the test a positive is a positive even if the level is low. A note from her doctor stating she is celiac may help with the college.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

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 in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

Share this post


Link to post
Share on other sites

i had a tonsilectomy around age 3 or 4

omg, i hope ravenwood's advice helps- if your daughter could have her own kitchenette- that could be her saving grace! poor thing.

it sounds like your problems dont lie in more testing & doctors visits- but rather making sure your daughter is 100% gluten-free & not being cross contaminated!! also she should explore on here & in her diet- maybe she's got additional food intolerances like dairy or even fructose or legumes that may be making her sick sometimes and thinking she's gotten glutened- OR she may be like some of us on here who almost have to go grain free...???? some of these "gluten free" products actually have minute amounts of gluten that may affect some more than others.

good luck with everything


1986- Elevated Speckled ANA/no Lupus.negative Sjorgens

2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.

no biopsy (insurance denied)

6/2010- Enterolab Gene Test:

HLA-DQB1 Allele 1 0302

HLA-DQB1 Allele 2 0302

HLADQ 3,3 (subtype 8,8)

7/2010- 100% Gluten Free

8/2010- DH

10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

Share this post


Link to post
Share on other sites

She needs to get into the colleges Disability Office and talk to them. Celiac is covered under the ADA. The college needs to make sure she has safe food. In my daughters case they put her in senior housing so she could have her own little kitchenette and let her opt out of the meal plan. At the least she should be allowed her own toaster, microwave, hot plate and dorm size fridge. As to the test a positive is a positive even if the level is low. A note from her doctor stating she is celiac may help with the college.

Thank You for taking the time to post.

I looked into alternative housing for her since her dorm does not allow hot plates or microwaves.

A local campus hangout offers gluten free snacks, drinks, and sandwiches. This hang out has been her huge safety net so she can continue to socailaize and EAT.

I think ... know she must be more proactive and follow a strict gluten free diet. At first if she cheated she had mild sypmtoms now she reacts faster and more intense. I thought I had some time this summer to educate her but is she isn't willing to listen , I am not going to waste my energy.

Personally I am exhausted. I fought with the medical staff last winter until her symptoms worsen and they knew soemthing else was happening. I asked" are we looking at a combination of problems or are all the issue related?"

She has been ill since the beginning of school. IN reviewing her diet I saw she was eating contaminated food. THe chocolate milk I buy has gluten free on the label so she assumed she was okay .

I came to this board cause I have no idea how some of you function. It is horrible when I have to spend days holding her head womiting and the doctors say she has a cold . an UTI or a stomach virus.

Now that she is in college and I get the skyps calls I can see the weight loss .

I do think she needs to refuse to eat it unless she knows for sure it is gluten free.

Share this post


Link to post
Share on other sites

i had a tonsilectomy around age 3 or 4

omg, i hope ravenwood's advice helps- if your daughter could have her own kitchenette- that could be her saving grace! poor thing.

it sounds like your problems dont lie in more testing & doctors visits- but rather making sure your daughter is 100% gluten-free & not being cross contaminated!! also she should explore on here & in her diet- maybe she's got additional food intolerances like dairy or even fructose or legumes that may be making her sick sometimes and thinking she's gotten glutened- OR she may be like some of us on here who almost have to go grain free...???? some of these "gluten free" products actually have minute amounts of gluten that may affect some more than others.

good luck with everything

My computer screen keeps jumping so I will keep this short.

Reading other board posts has made me more focused .

SHe was a happy babay and somewhere along the way got really difficult. Ironically her favorite food is PASTA. Looking back on her life the last few weeks I can see that she is happier since going off gluten.

At times she would be angry, sensitive, difficult which I really think is due to the gluten allergy.

I see her reaction to the gluten as a toxin attacking her brain, joints and stomach. Anytime she has been glutenized I force her to drink and poo. I encourage her to drink water and eat fruit. I found that blueberries made her headaches and vominting subside much faster.

To thos who post thank you. to hose who will read this... REad as much of the board as possible casue there are so many solutions posted . Thank YOU

Share this post


Link to post
Share on other sites

My computer screen keeps jumping so I will keep this short.

Reading other board posts has made me more focused .

SHe was a happy babay and somewhere along the way got really difficult. Ironically her favorite food is PASTA. Looking back on her life the last few weeks I can see that she is happier since going off gluten.

At times she would be angry, sensitive, difficult which I really think is due to the gluten allergy.

I see her reaction to the gluten as a toxin attacking her brain, joints and stomach. Anytime she has been glutenized I force her to drink and poo. I encourage her to drink water and eat fruit. I found that blueberries made her headaches and vominting subside much faster.

To thos who post thank you. to hose who will read this... REad as much of the board as possible casue there are so many solutions posted . Thank YOU

does she have a kitchenette? in her room or dorm ? there is a brand called Tinkyada- in Publix, Whole Foods, Amazon- their brown rice pasta is KILLER- i love it now way more than regular pasta!! and for easy nights- i have a rice mac& cheese box (forget the brand- maybe Amy's?)

- anxiety is normal- gluten gave me HORRIBLE anxiety... im still having some Shortness of Breath.. going to get thyroid checked tomorrow could be that.

ideally- her goal should always be 100% gluten free... gluten cc should only be accidental- she should never think she could cheat: BUT- you should get her some L-Glutamine Powder.. it's an amino acid (marketed to workout guys)- but it totally helps the smooth muscle of the intestines to heal itself- good to take a spoonful mixed with water before bed- let the body use it to heal over night (fine to take every night). GHEE does the same thing- but it can be expensive & has to be refridgerated... you could order Butyrate in tablet form (the chemical in GHEE)- it heals the small intestine- and OH BOY- u actually see results the next BM :) love the stuff


1986- Elevated Speckled ANA/no Lupus.negative Sjorgens

2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.

no biopsy (insurance denied)

6/2010- Enterolab Gene Test:

HLA-DQB1 Allele 1 0302

HLA-DQB1 Allele 2 0302

HLADQ 3,3 (subtype 8,8)

7/2010- 100% Gluten Free

8/2010- DH

10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

Share this post


Link to post
Share on other sites

You have to get it though your daughter's head that she is celiac and poisoning herself. There is no way she can gluten challenge for an endoscopy. It sounds like she would land in the ER again.

She absolutely needs to refuse to eat any food that might have gluten. When the food on her meal plan is uncertain, she needs to be able to go back to her room and fix a safe meal. As a parent, you can help to make sure she has safe alternatives. As Raven says, she needs a refrigerator and a way to cook in her dorm, enough money to buy some basic groceries, and a means of transportation to get to and from the grocery store to buy them.

You are here on the board but it really sounds like your daughter is the one who needs to be reading.

Share this post


Link to post
Share on other sites

You have to get it though your daughter's head that she is celiac and poisoning herself. There is no way she can gluten challenge for an endoscopy. It sounds like she would land in the ER again.

She absolutely needs to refuse to eat any food that might have gluten. When the food on her meal plan is uncertain, she needs to be able to go back to her room and fix a safe meal. As a parent, you can help to make sure she has safe alternatives. As Raven says, she needs a refrigerator and a way to cook in her dorm, enough money to buy some basic groceries, and a means of transportation to get to and from the grocery store to buy them.

You are here on the board but it really sounds like your daughter is the one who needs to be reading.

I am on the board for peace of mind.

I think of her gluten allergey as a mosquito bite: YOu know you shouldn't itch them but it feels good when you do and then you are miserable.

HOw many times have your parents told you to clean your room? Do you do it or wait until you can no longer find that pair of shoes? I keep chanting for her to come to this site.

For the last three maybe five years I have been trying to figure out why she gets tonsils that kiss and no response to anitbiotics. Her complaints of cold heads, numbness in her fingers and toes , nausea..........

The freakin phone call telling me that she has celiac came when I was sick with bronchitis and just discovered the air conditioner had fallen on it side in the attic.{ Does when it rains it pours fit?} I immediately put her on a gluten free diet knowing it was going to be a roller coaster ride.She looked great for the first time in years.

So now that her tonsils remain kissing We need to figure out if it is a gluten reaction or a need for removal. A surgeon fixes things by surgery..... So of course they want to do a coblation. SHe is anemic 29 to 31 for a HCT for the last three years which by the way I questioned after I asked to read her chart.

They assumed she was anemic due to being a menstrating female.This was the needle in the haystack moment. THe kid only gets her period every three months so how could her anemia be this severe?

I swear if I was rich I would be sending you'll deep tissue massage gift certificates.

THe kid can tie her shoes, ride a bike, drive a car,,,,,,,, and yes she needs to take responsibility for what she tosses in her mouth. She is learing the hard way.

I question therefore I seek answers.

TY for the glutamine powder and ghee insight.

She says that drinking lots of water even though she vomits it and eating blueberries does make her feel better faster. Melon was also a guick help.

Share this post


Link to post
Share on other sites

i drank a nice dose of L-Glutamine w/ water last night... and my morning bathroom visit was spot on ... pretty close to the "S" that Dr. Oz always talks about :D


1986- Elevated Speckled ANA/no Lupus.negative Sjorgens

2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.

no biopsy (insurance denied)

6/2010- Enterolab Gene Test:

HLA-DQB1 Allele 1 0302

HLA-DQB1 Allele 2 0302

HLADQ 3,3 (subtype 8,8)

7/2010- 100% Gluten Free

8/2010- DH

10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

Share this post


Link to post
Share on other sites

The tonsils are probably a mix of inflammation from gluten and dry air. The missed periods and anemia are definitely gluten. Cold hands may be low thyroid that goes hand in with celiac. She should have her TSH tested.

Gluten is NOT a mosquito bite for us. Mosquito bites heal, even if you itch them. You can clean your room as good as new. Gluten does more and more cumulative damage. Once you have one autoimmune disease, more can follow. The body learns more and more damaging responses to gluten, and the malabsorption causes nutritional deficiencies that weaken the bones and damage the nerves. Severe celiac like your daughter has is not something to play around with.

One other thing - I had throat infections all winter when I lived in a cold climate and it was dry. Running a humidifier in my room solved the problem.

Share this post


Link to post
Share on other sites