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silveylane

Can 24 Hrs Of Gluten-Free Make You Feel This Much Better?

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My 15 y/o has always had sleep, focus, dermatitis, and strong GI problems. GI problems (nausea, vomiting, diarrhea, reflux) would come & go and chalked up to viruses, overuse of antibiotics, poor health. He is also lactose intolerant. THEN everything began to exacerbate 2 months ago. He has not been to school since Oct 12th due to unpredictable repetitive GI problems 24/7. He has subsequently had 2 hospital admissions and 1 ER trip (scads of radiology scans, blood work, and re-hydration). Medications seem useless and often make the problems worse. I have been reading your site and the internet for a good 40 hours on and off. I have been unable to get a doctor to do a Celiac blood test so far.....or even get in to see a pediatric GI specialist! Soooooo, I started a very meticulous gluten free diet with him 36 hours ago. He has not thrown up ONCE since then. He seems to be able to focus again, but he is very, very tired. If you are Celiac or Gluten intolerant (don't know the difference yet), CAN BEING gluten-free RELIEVE YOUR GI SYMPTOMS THAT QUICK? Desperate to help my child. Thank you.

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My 15 y/o has always had sleep, focus, dermatitis, and strong GI problems. GI problems (nausea, vomiting, diarrhea, reflux) would come & go and chalked up to viruses, overuse of antibiotics, poor health. He is also lactose intolerant. THEN everything began to exacerbate 2 months ago. He has not been to school since Oct 12th due to unpredictable repetitive GI problems 24/7. He has subsequently had 2 hospital admissions and 1 ER trip (scads of radiology scans, blood work, and re-hydration). Medications seem useless and often make the problems worse. I have been reading your site and the internet for a good 40 hours on and off. I have been unable to get a doctor to do a Celiac blood test so far.....or even get in to see a pediatric GI specialist! Soooooo, I started a very meticulous gluten free diet with him 36 hours ago. He has not thrown up ONCE since then. He seems to be able to focus again, but he is very, very tired. If you are Celiac or Gluten intolerant (don't know the difference yet), CAN BEING gluten-free RELIEVE YOUR GI SYMPTOMS THAT QUICK? Desperate to help my child. Thank you.

It could relieve some, but probably not all. Could also be an allergy (which doesn't eliminate Celiac, but allergies are fast-acting and fast-going, generally).

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Please contact your primary doctor and request-demand a FULL Celiac Panel. Going gluten free could jeopardize the findings. If that is not possible, continue with a strict gluten free diet.

After being sick for so long he must be suffering from non-absorption of essential elements, which would contribute to his fatigue.

Have your doctor run a full Metabolic Panel as well, as soon as possible.

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Thanks for the "DEMAND" encouragement. The hospitals just put him on IVs, water and no food. Then 3 days later after negative radiology results, release him with prescriptions for reflux, antispasmodics, and anxiety. Reflux med has helped. Antispasmodics made vomiting worse and more often. Child can gag, throw-up, heave 4-5 times successively immediately after ANY bland food that I now see has all had wheat in it. Diarrhea 24/7. Good kid and student. No behavior problems. Have DEMANDED both hospital admissions and now have "referrals" to GI pediatric specialist with appt in 2+ weeks. That seems like eternity to me as I have watched this child lose 20 1bs in 4 weeks. But just not HEARING or stepping in the GI problems for 36 hours has been blessed relief and absolutely NO GLUTEN for at least 36 hrs now. I already had him an appt with dermatologist because of scalp dandruff/scabs and he does have eczema as well...but he was in hospital & I had to cancel. Have another doctor appt this Friday to once again DEMAND Celiac blood test: He would be 4 days gluten free then -- COULD THAT COMPROMISE THE BLOOD TEST? Many, many thanks.

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P.S. I have a full metabolic panel done on him every 6 months as he has lipid disorders (high triglycerides, very low HDL) and have been told he has "Metabolic Syndrome" previously along with other neuropathology -- hand tremors, gait, ADHD, weak muscles, etc. Blood glucose is always great, but I am also researching hyperinsulinemia as diabetes runs in the family.

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Thanks for the "DEMAND" encouragement. The hospitals just put him on IVs, water and no food. Then 3 days later after negative radiology results, release him with prescriptions for reflux, antispasmodics, and anxiety. Reflux med has helped. Antispasmodics made vomiting worse and more often. Child can gag, throw-up, heave 4-5 times successively immediately after ANY bland food that I now see has all had wheat in it. Diarrhea 24/7. Good kid and student. No behavior problems. Have DEMANDED both hospital admissions and now have "referrals" to GI pediatric specialist with appt in 2+ weeks. That seems like eternity to me as I have watched this child lose 20 1bs in 4 weeks. But just not HEARING or stepping in the GI problems for 36 hours has been blessed relief and absolutely NO GLUTEN for at least 36 hrs now. I already had him an appt with dermatologist because of scalp dandruff/scabs and he does have eczema as well...but he was in hospital & I had to cancel. Have another doctor appt this Friday to once again DEMAND Celiac blood test: He would be 4 days gluten free then -- COULD THAT COMPROMISE THE BLOOD TEST? Many, many thanks.

Four days, most likely not. You can also have your doctor biopsy his eczema as a possible Dermatitis Hepitaformis diagnosis, which is closely associated with Celiac Disease.

Best of luck to you for quick answers.

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A week probably won't change blood work; however, no one really knows.

Just get it done ASAP. And if you put him back in gluten and it starts again that's a good indicator it's gluten/wheat related.

Don't give up!

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Make sure you demand the following tests:

total IgA (validates the IgA testing)

IgA/IgG tTG (tissue transgluaminase)

IgA/IgG DGP (deamidated gliadin peptide)

IgA EMA (endomysial antibody)

IgA/IgG AGA (anti gliadin antibody- these are being replace by the newer DGP, but some labs are not able to run those so may need these if the DGP not available)

He also probably needs complete iron tests, folic acid and ferritin tests. It probably wouldn't hurt to have full vitamin/mineral tests run too. It sounds as if this kid is miserable and in desperate need of relief.

I don't think four days is likely to sway the blood testing. However, if you keep him gluten free and need/decide to have an EGD(upper scope) done with biopsies, depending how long before he has it, it could affect that. Be aware that there is around a 20-30% false negative on both blood work and biopsy. After you complete all the testing you are going to do, I'm with you, keep him gluten free.

It is also a possibility that they could biopsy his rash for DH (dermatitis herpetiformis). A diagnosis of DH is a diagnosis of celiac. I do not have DH, but I do believe you have to specifically ask for a DH biopsy and it has to be done to the skin adjacent to a lesion and not the lesion itself. There are people here more knowledgeable on this.

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Thanks to each of you for the exact tests to get done. During this past week, if I have not been cleaning up the dreaded GI symptoms, obsessing over what he could eat/try, or spending time with him holding him and reassuring him that he is not going to choke and die---I have been reading your forums and everything on the internet about celiac disease. Looking back over the past month, the only sure fire thing he could keep down for a few hours was plain baked potato, rice, bananna. On the 1st hospital admit, an EGD was done after 4 days of IVs and nothing but water. No biopsy. The EGD only confirmed long standing GERD. His anxiety has been off the charts, and fearful of going to sleep. They released him on 80 mg Prilosec and a low fat diet. 5 hours later we are at home and with the now precious IV gone -- all the GI symptoms return with a vengence.

Starting in 5th grade, these episodes would occur but not as long and the doctors would put him on 30-60 days of Nexium, or Prevacid. At age 11, he was taking Prevacid 60 mg/day for months.

Come th grade, the GI problems persisted plus severe insomnia. We changed schools. The problems continued to persist in bouts, but he loved his new school and made every effort to go: Get up, throw-up, shower, and go to school. Attendance was still a problem.

This summer he asked if I would take him to a psych as he thought something was wrong with him. Can you imagine - a 15 y/o REALLY wanting a psych? I believe when kids ask for help -- you give it to them. So I took him to a reputable adolescent psych that just does medication management: Lexapro 20 mg/day for anxiety (he has no depression and is a cheerful child despite it all), and Klonopin for insomnia. No relief. I didn't like the Klonopin because even though it is supposed to knock you out 15 minutes later, maximum dosage did not after 4 days so I stopped it.

Second hospital admission (different hospital) -- same routine -- IVs, more blood tests, but this time they did a complete colon cleanse STARTING AT 5 PM UNTIL 5 AM THE NEXT MORNING. Ridiculous. You would've have thought they could've waited to the next morning! They diagnosied him with IBS and reflux, discharged him on 40 mg Prilosec and added Anaspaz (antispasmodic) 4 times a day. Same story: Go home, throw up all over again and even more wretching, burping and just these horrible episodes where it looked like to me his esophagus was having seizures! I think the Anaspaz made it worse and all this repetitive burping and wretching, and then run with diarrhea! Oh, and all this time he has been taking Zofran too (antinausea).

Prior to me starting the gluten-free diet now 2 days ago, he would just look at me and say, "Just give me something, anything so I can taste it and pretend. What difference does it make? You know I will throw it right back up."

He is a quick, bright student and yet he has not been able to even concentrate on one piece of school work. I've read about "brain fog" on your forum. Straight A student and cannot even get through 10 pages of reading. The need for sleep is extensive.

I already knew which foods to exclude because of acid reflux (his favorite ketchup and pasta sauce) and certain fruits. Over the past month, I am surprised we have not grown feathers from all the grilled chicken we have ate. No fried foods whatsoever. The celiac disease dawned on me when I looked back and saw that a lone baked potato did stay down. Baked potato chips did stay down (gluten-free) but not crackers. Grilled chicken strips by themselves with just plain rice did stay down. But then at the next time he would eat Chicken Noodle Soup (I see now it has gluten in it), all the wretched purging would start again. Bananas would stay down, but not any other fruits -- totally undigested. Same with vegetables unless I cooked them to mush.

He played sports from ages 4 until last year -- could not keep up with the other kids or sustain the training.

He has battled being "fat" since age 4. (That is rapidly changing as all the food goes on the floor, down the toilet, or over the fence.) So my extended family seems to be "applauding" that he has lost 20 1bs in 4 weeks and they are all confident it is a weight problem and an emotional problem. I am not.

QUESTIONS: Were any of you overweight? Do any of you take antacids (Prilosec)? Do any of you have this high end anxiety and fear of dying before you were diagnosed? Did any of you have this lethargy and fatigue? (My extended family calls that "laziness"!) Do any of you have those dark shadows around your eyes? This nonstop belching, chest pain -- is that esophageal spasms?

These doctors think I am a (b)witch because I am soooooo demanding that they help this child and none of them seem concerned that he has missed a solid straight month of school.

What's your take? Thanks.

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QUESTIONS: Were any of you overweight? Do any of you take antacids (Prilosec)? Do any of you have this high end anxiety and fear of dying before you were diagnosed? Did any of you have this lethargy and fatigue? (My extended family calls that "laziness"!) Do any of you have those dark shadows around your eyes? This nonstop belching, chest pain -- is that esophageal spasms?

These doctors think I am a (b)witch because I am soooooo demanding that they help this child and none of them seem concerned that he has missed a solid straight month of school.

What's your take? Thanks.

The poor guy. Do get the blood tests done ASAP. Call your doctor's office and tell them you want to pick up a lab slip for the draw today. When you call ask to speak to a nurse rather than telling the receptionist. Explain what has been going on briefly and that after all this time throwing up repeatedly and having D you have been feeding him gluten-free for a couple days and that has stopped.

It is a misconception that all of us are rail thin many are overweight at diagnosis. For one thing when the body isn't absorbing nutrients like it should the brain may signal that is is still hungrey which would encourage someone to eat more.

It is too bad he doesn't have a more savvy psychiatrist as not responding to meds for depression or anxiety is typical for us. Of course he is anxious he is deathly ill and they can't figure out why. Chances are the anxiety will be relieved when he has been on the diet for a bit longer.

He may well feel fatigued for a bit, he may also go through a bit of withdrawl so if he seems moodier after a short bit that can be expected.

It is good to hear that he is feeling so much better. Personally I would not put him back on gluten for another endo but if you do decide to and he reacts violently do call the doctor immediately as some will stop the challenge and diagnose at that point.

As others have mentioned there is the risk of a false negative on testing so go with what his body is clearly telling you if his tests should come back negative. You may find your Ped will give an 'official' diagnosis after his symptoms have clearly been relieved by the diet since he has been so ill.

Do be sure to read as much as you can here as there are things you need to do to keep him safe at home and ask any questions you need to.

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I tested positive for an IgE allergy to gluten. I tested negative for Celiac, though my mom carries the genes. I do NOT have severe symptoms, just brain fog, mild headaches and abdominal pain (this is the worst symptom for me)...its very come and go though, I can go months without and then have a bad week, then back to normal.

I just started a gluten-free diet, I have been very strict...the first two days I felt okay, kind of had problems with fatique and brain fog, then I found out I should not be eating gluten free oatmeal. I stopped and the next 2 days were GREAT! I felt better than I have in a long time, then I went out to lunch and I am sure I ate gluten, because the next 2 days I felt awful. Today is day 2 of being clean Gluten free again, and today I am starting to feel good again.

I am guessing if its an allergy, and there really isn't any body healing to be done, just taking down inflammation and letting your immune system to return to what it should be, the symptoms can leave very fast on a gluten free diet.

I go today to have skin testing done for more food allergies.

Good Luck! I hope they figure it out!

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I suggest taking your child to a holistic Dr. Battling with a physician who doesn't really know what is going on does more damage to your child as they will just give you meds or guess at what is going on. My problem started with chest pains which I went to the emergency room for. They did all sorts of heart tests and since my heart was fine said you have GERD, take these medications. I went on askapatient.com and saw that those anti GERD meds cause more problems than they solve and the side effects are quite serious. So I didn't take them. Instead I found a holistic Dr. and tasked them with finding out what was wrong. They ran a set of test and the only thing wrong with me was gluten intolerance. I was a few points from Celiac and had the gene so they said I needed to go gluten free. They also gave me supplements to help rebuild my GI tract. It took about six months to a year to get everything healed up again. Your son likely has alot of damage from the meds he has been taken. A holistic Dr. will do the right tests without your having to know what they are and will help prescribe things that can help him heal. Mine doesn't take insurance but does give me receipts to submit myself. It is well worth it to not have to deal with a clueless Dr.

Good luck!

Michelle

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I agree about demanding the full panel. A lab draw should not require waiting four weeks to see a GI specialist. I was able to get ours ordered same day by a family doc. If your dr won't do it, call the other drs in town, explain the problem to scheduling and you just might find someone willing to help.

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You guys are fabulous and a huge encouragement. I can tell that most of you have traveled some very, very long roads to get to where you are today. I hope I can shorten that road for my 15 y/o.

One of you mentioned that many celiacs are overweight and correlated that with an insatiable hunger due to not metabolizing needed nutrients. This child was born hungry and can smell food 2 miles away. My other 2 grown children are "rails". There is no obesity in immediate family, but lots in extended family on both sides, as well as type II diabetes. My husband had severe reflux for about 2 years due to absolute, sheer undulated stress and ate nothing but rice, red beans, water, and backed potato for almost a solid year while taking every OTC antacid there was back then. So we already knew about head of bed elevated, tight clothes, acid food, etc. None of that has worked with this 15 y/o. His reflux has been so bad that at times he could just be talking, and it whoosh out....like a baby with spit up....and then he would apologize, clean it up, and go on with the conversation as I stood stunned!

Today was the usual frustrating run around: Took the kid to the child psych for the anxiety -- she took him off Lexapro and now wants Ativan 30 mins before each meal and at bedtime. Says it works great on kids with high anxiety by calming down the smooth lining of the GI tract. Any of you ever used this?

I told her had been throw-up free for 48 hours now since putting him on a meticulous gluten-free diet, but still has some minor reflux. I advised her we were seeing a pediatric GI specialist tomorrow and I wanted him tested for "gluten". Her response, "Oh......Celiac DISEASE?" The kid almost hyperventilated: WHAT? I REALLY AM DYING? How stupid can an adult / doctor / psych get????

All I had told this child was that I thought he might possibly have an allergy to wheat and its by products. Why would I want to stress him out any more than he already is IF he does not end up being Celiac?

We left with the new handy-dandy prescription, and the child went to the first bathroom and puked. All the way home I had to help reassure him that I was getting everything possible evaluated and could not think of any terminal disease that he might have. And in the meantime of all these evaluations, gluten-free was allowing him to eat again and we were going to stick with it.

Honestly, I do not know how any of you maintain your sanity or where you get your energy from. It is a zoo trying to get help, and then learning to shop for gluten-free and learning to re-cook is so overwhelming.

Side note: My husband has suffered some neurological episodes in recent months and so I also had to accompany him to a Neurologist/psych. Great guy. I mentioned the kid to him and how the gluten-free was giving him relief. He so calmly said, "Then why do you want a blood test -- obviously, he is either gluten intolerant or celiac. Just go with the diet!" So simple.

Thanks for letting me talk/vent to ya'll. If any of you though have taken this Ativan for calming the GI tract down, I would be interested in hearing if it worked for you.

Last, to answer previous comments/questions:

*No knowledge of celiac or other autoimmune disorder in extended families or immediate family

*I am encouraging my 37 y/o daughter to get celiac tested for a miriad of long term problems

*Anxiety/panic disorder common within extended family

I have not been on a forum before, and not so savy at this "posting/reply" stuff. Hope I am doing it right:)

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Take a look at the side effects and experiences of others taking Ativan.

http://www.askapatient.com/viewrating.asp?drug=17794&name=ATIVAN

You can also use askapatient to look up some of the other meds your son has been on and see if some of the symptoms he has are side effects from the drugs.

Some things to try for your child that should help heal his gut.

Probiotics to replace the good bacteria that the antibiotics have killed. Anytime anyone, including pets, takes antibiotics it is important to follow up with probiotics to restore good gut bacteria.

Digestive enzymes to help him digest his food.

I think both digestive enzymes and probiotics should both be OK for a child.

I also take

DGL (Deglycyrrhizinated Licorice Root) to help the stomach lining heal.

L-Glutamine is an amino acid that helps support the integrity of the intestinal lining.

However since your son is a child it would be good to get a holistic Dr's opinions of whether these two are OK for him.

All these are available at a health food store.

Regards,

Michelle

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Take a look at the side effects and experiences of others taking Ativan.

http://www.askapatient.com/viewrating.asp?drug=17794&name=ATIVAN

You can also use askapatient to look up some of the other meds your son has been on and see if some of the symptoms he has are side effects from the drugs.

Some things to try for your child that should help heal his gut.

Probiotics to replace the good bacteria that the antibiotics have killed. Anytime anyone, including pets, takes antibiotics it is important to follow up with probiotics to restore good gut bacteria.

Digestive enzymes to help him digest his food.

I also take

DGL (Deglycyrrhizinated Licorice Root) to help the stomach lining heal.

L-Glutamine is an amino acid that helps support the integrity of the intestinal lining.

However since your son is a child it would be good to get a holistic Dr's opinions of whether these are OK for him.

All these are available at a health food store.

Yes, probiotics. I would recommend dairy free probiotics.

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Great info! I did get some Coconut milk probiotic yogurts yesterday. Didn't know about the digestive enzymes. Holistic doctor is "new" for me and I will have to search for one. The Ativan - the psych knew I am not a fan of any short term addictive med, but he is over the top stressed, so I will see. I doubt it will work anyways. Thanks for helping me through this journey.

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It sounds like you are on the right track and I'm glad you have found this forum! I want to respond to one thing, though:

Side note: My husband has suffered some neurological episodes in recent months and so I also had to accompany him to a Neurologist/psych. Great guy. I mentioned the kid to him and how the gluten-free was giving him relief. He so calmly said, "Then why do you want a blood test -- obviously, he is either gluten intolerant or celiac. Just go with the diet!" So simple.

There are reasons to get a celiac diagnosis if possible. Here are a few:

  • In order to be able to force schools, military, etc to take his diet seriously, you must have an official diagnosis. This is major.
  • People with celiac disease often benefit from annual blood tests to make sure that they are actually gluten-free enough. Just feeling better might not tell the whole story.
  • Without baseline numbers at the time of diagnosis, follow up testing will be difficult to interpret.
  • If he actually has celiac disease, avoiding all gluten for life is imparative. If he is allergic or gluten intolerant, exposure at levels that do not cause symptoms may be ok.

We did not get blood work initially and regret it.

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To answer your original question, yes it can happen that quickly. After years of uncontrollable D, I was better the next morning after cutting out only bread and my morning cereal. It was unbelievable.

As time went on I did experience some symptoms again and found that I had to cut out more things.

Also as time went on, several more symptoms went away. I didn't know how sick I had been until I got better.

Best wishes.

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silveylane, on 17 November 2011 - 06:56 PM, said:

Side note: My husband has suffered some neurological episodes in recent months and so I also had to accompany him to a Neurologist/psych. Great guy. I mentioned the kid to him and how the gluten-free was giving him relief. He so calmly said, "Then why do you want a blood test -- obviously, he is either gluten intolerant or celiac. Just go with the diet!" So simple

GET YOUR HUSBAND TESTED!!!! yes, I am screaming!! The neuropsych could order....and his advice may well be tied into insurance not wanting to cover celiacs.....

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QUESTIONS: Were any of you overweight? Do any of you take antacids (Prilosec)? Do any of you have this high end anxiety and fear of dying before you were diagnosed? Did any of you have this lethargy and fatigue? (My extended family calls that "laziness"!) Do any of you have those dark shadows around your eyes? This nonstop belching, chest pain -- is that esophageal spasms?

Yes to all of those.

Now with regards to anxiety and depression. My depression almost completely disappeared after a few weeks gluten free. It's only been a couple months for me so far, with only a couple episodes of depression (I think I got some cross contamination in there). Anxiety improved when I took zyrtec for my hives. It didn't help the hives, but it knocked the anxiety down a couple notches. I found out later that antihistamines are actually a first line of defense at mental hospitals.

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P.S. I have a full metabolic panel done on him every 6 months as he has lipid disorders (high triglycerides, very low HDL) and have been told he has "Metabolic Syndrome" previously along with other neuropathology -- hand tremors, gait, ADHD, weak muscles, etc. Blood glucose is always great, but I am also researching hyperinsulinemia as diabetes runs in the family.

As you probably know from your research, almost every symptom here is associated with untreated celiac disease. Get the Red Book.

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Oh, and to answer your topic title question, YES. It can. :)

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To All of You: Sorry I have not responded. The kid, myself and my husband have all been having serious meltdown primarily over the child's huge anxiety.

To respond to each of you:

Great point and info about getting Celiac blood tested for future use in qualifying for mandated diet.

Malabsorption & Hunger: Hit me between the eyes! It would be so incredibly wonderful to get this kid's hunger to go away. I've always thought of it as close to an addiction.

My husband/neurology: I personally do not see ANY symptoms of Celiac disease for him, and we have known each other 40 years. He has had acid reflux years ago, when he was under a great deal of stress. I do think my adult daughter may have Celiac disease and she obtained a blood test last week. However, I still cannot make any genetic link in our extended family. However, the "kid" is actually my first grandchild that I have been raising/adopted/custody since about 2 weeks old. I know very little credible information about his father's genetics.

Can You Feel Better this Much Quicker after stopping Gluten?: THANK YOU! I see absolute improvement with gluten-free products, except he still has the historical 1-2 am reflux, and vomiting until it's just dry heaves.

Anxiety: Not thrilled with his psych. Am not giving him the Ativan as instructed, but sometimes. I see now he is also depressed, and I know tranquillizers are a "downer" too and could impact the depression even further. Have a call into the psych. (See Below)

Things in the Works:

He has a derm appt in mid-December.

I know the primary source of his anxiety and sheer panic attacks now (see below), and believe that the anxiety/panic is intensified with the current GI distress and failure to "get well".

We saw a true-to-life GI pediactric specialist on Friday. She was great! She ordered a full Celiac Blood test (already done), prescription for an antibiotic for bacterial overgrowth (grrrrrr--fighting with the insurance company as it is $1475, but will ge that fixed tomorrow), AND he has an impedment reflux test scheduled this coming week. She also wants him on a probiotic after he finishes the GI antibiotic.

So much is in the works, and ya'll have taught me a lot. Textbooks are great, but your life experiences are once again invaluable.

Busy-busy week ahead with doctor appts M-W, and then I have to cook this gluten-free Thansgiving Dinner (already figured out, and it will be "light" with a few traditional dishes missing just because I don't think his system can handle it yet.)

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Among my symptoms I would list anxiety/depression and huge problems with fatigue. They clear up totally when gluten free.

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