Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

My Son Is Suffering Chronic Sinus Congestion, Asthma


virginiagl

Recommended Posts

virginiagl Apprentice

It seems reasonable to me that my son is suffering from food sensitivities, and intolerances the same way I am. He developed asthma about two years ago and and has been suffering from chronic chest and sinus congestion for at least 5 years. His pediatrician wanted me to put him on antihistamines long term so I tried it, but they didn't bring him much relief. We've also tried all the over the counter stuff such as zyrtec and claritin but they bring little relief as well.

Now that I KNOW I am suffering from several food intolerances/allergies, it seems to follow that he too may be having problems. He looks small to me and constantly has dark circles under his eyes. Over the past year constipation has been a huge problem for him as well. I am very concerned! I have only known about my own issues since January, and since then through doing a lot of reading I've come to realize how much food can affect us.

The bottom line is I need to have him checked, but I'm afraid his pediatrician isn't going to know what to look for or might be uncooperative in some way. I guess I'm on the defense here, but one would think that pediatricians would look for food intolerances immediately in a child suffering chronic allergies and asthma. It just seems like a no brainer to me after all the research I've been doing.

I wanted to completely cut some of the biggest food offenders out of his diet, including gluten, to see if it made a difference after a couple of months. I have cut dairy, wheat, wheat gluten, peanut butter, and soy out of his diet at home, but I can't control what his dad feeds him because his dad won't cooperate at all unless a medical doctor says it is appropriate. Basically because it is my idea, and his dad doesn't respect my ideas, I now am being forced to find proof via a medical doctor. This is scary to me based on all the negative feedback people are reporting regarding their board certified American Medical Association doctors.

I need advice and information if you have it. Maybe there are good suggestions on how to approach my son's pediatrician? Or maybe someone knows of a good doctor or allergist in Austin? Thanks in advance! Oh and if you have ideas on how to get the cooperation of his dad that would be nice too, but I know that is a tall order!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



missy'smom Collaborator

We have similar issues with foods, allergies and sinus problems. We have finally gotten back some control and are enjoying much improved breathing as a result of:

1)getting allergy tested

2)environmental control

3)nasal rinsing

4)removal of foods from the diet

5)meds

and 6) allergy shots(we'll see how much it helps)

Being gluten-free did nothing for our nasal issues. I've had a lifelong problem with dairy-GI symptoms and possible skin. Eliminating it on my own unexpectedly cleared up my nasal passages quite a bit but wasn't enough long-term to keep me satisfied. Nasal rinsing for years helped alot too-warded off infections and kept me off antibiotics but again, wasn't enough. Allergy testing revealed a strong dustmite allergy for me so pillow encasements AND mattress encasements(I tried just pillows but wasn't helping enough) laundering ALL the bedding every week and sheets in hot water every week made that last big bit of difference. But I need to do ALL of the above faithfully.

I tried nasal rinsing with kiddo and he wasn't willing to be consistant enough to make a difference. Environmental control measures weren't much help either and meds prescribed by our former allergist weren't working. I wondered about foods because of my experience with dairy. So we got him tested and decided that it was time to go ahead with shots. His environmental load is significant and he's strongly allergic to many things EVERY season so never gets a break. My sister is similar but hasn't been tested and hasn't had shots and just gets worse every year. We hope the shots will prevent DS from getting to that point. So far the specially blended nasal spray is working well. He's happpy with it. I would prefer not to use so much meds but I have to conceed on that point.

When you are inquiring about allergists, ask if they are willing to run and regularly run extensive food panels(like 80-100). Our former allergist would if asked but not usually and really didn't believe in them. He dismissed positive results. Also ask if they believe in dietary changes even if the results are not to the point of causing an anaphalactic reaction. That was our former one's stand(no changes)-not someone I could work with given my son's positive blood and skin test for wheat. Our current allergist has patients conduct an elimination/challenge diet folloing testing, with all the foods that they show a positive reaction to. We are doing that right now. I noticed that my son had dak circles under his eyes the first few days we re-introduced corn. I will do a second elimination trial with that ingredient later to see if we get the same or another reaction. Then we'll decide whether it goes off the menu or gets rotated to only once in a while. Ask about the testing protocol. I like the fact that our new allergist doesn't just put them all on in one shot for the skin testing but based on background they puddle some serums on the skin, then wait and then prick to check. And they may do a few at a time before proceeding to the next ones. This all especially if stronger reactions are suspected. Look for ones that advertize more individual care or maybe accept fewer patients in order to do so. Ask if they are aware of celiac disease. I don't know that I would be comfortable asking them to DX it, but our runs gene tests through Prometheus labs, which is well respected and since they are well informed about celiac disease I feel that they may understand these dietary issues and unique challenges.

OBXMom Explorer

We all fight the allergy battle at my house, and as in Missy'smom household, it usually isn't easy to do. You have to take environmental stuff as well as food into account, and determing culprits then how to handle them is tough. I think finding the right allergist is really key. The one that helped my son prided himself on being the best around in dealing with food allergies, and our children's hospital sent us to him. (I went to our children's hospital feeding clinic not for allergies but because of my son's fear of new foods, and they were smart enough to say that it was going to be tough to deal with his fear until we knew what he should be afraid of. I mention this because maybe a call to a nearby children's hospital would help you get some leads.)

For my son, the allergist asked what my son ate (which unfortunately wasn't that many things) and tested him for those. He tested positive for a number of his frequently eaten foods, so we only let him eat the ones he was not allergic to for a while, then added them back in one at a time. I kept a diary and we used a 1- 10 scale for his symptoms. It was a long process, and I could not have done it on my own.

And even after all the food work, we still take meds and swear by saline nose spray. You don't mention how old your son is, but my childrens' allergies, though still requiring treatment, have definitely improved with age. Hope you get the answers you need soon.

  • 2 weeks later...
J4K Newbie

I agree. Get him tested. Start with an allergist. The tests, though not always fun, are easy and you can leave the office with hopefully some answers about actual allergies. Kids with allergies often have what we call shiners under there eyes. And his allergies will also trigger his asthma. I'm not sure where you live but if you google "find an allergist" you should be able to find one in your area. If his allergies end up being environmental, allergy shots are always an option to help control his symptoms as well. If his symptoms are food related, food allergies can also be tested in the office. Some MD's will have a blood test done (RAST) as well as skin testing. However, food intolerance is a whole different ball of wax. If allergies are ruled out then go back to your pediatrician and ask about testing for celiac disease. If he/she won't do it, find someone who will. Taking him off of gluten prematurely will alter his tests and you will have to put him back on for a month in order for them to be accurate.

You are your child's best advocate! I unfortunately have learned it the hard way. A lab test was missed by my daughter's doctor two years ago. Because I am a nurse I started investigating and found she had a blood test drawn that was positive which would have led to her celiac diagnosis in April 2008. I trusted the Dr. when I was told all was negative. In January 2010 I found the result and immediately got her in for an endoscopy to confirm celiac. She has been on a gluten free diet for three weeks now and feels so much better. I'm not telling you this to get you not to trust the medical community (as I am a member). Always ask for copies of results and don't be afraid to ask questions. It often takes a week or so to get most blood results. Be patient but you haven't heard from your child's MD in a week to ten days, call them.

As for your son's dad, he will come around if you have the medical community supporting you. Although not perfect, most doctors have your child's best interest at heart and will help your find answers.

Good luck! And hope you get answers for your questions!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,297
    • Most Online (within 30 mins)
      7,748

    JRGOODRIDGE18
    Newest Member
    JRGOODRIDGE18
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      Hello, @Dora77, I agree with you that your doctors aren't very knowledgeable about Celiac Disease.  My doctors didn't recognize nutritional deficiencies either.  I became very deficient in vitamins before I was diagnosed, so having experienced similar, I understand what a difficult time you're having.   Poor absorption of essential nutrients is caused by the damage done to the intestines by Celiac Disease.  The gluten free diet can be low in essential nutrients, so supplementing to boost your absorption is beneficial.  New symptoms can develop or worsen as one becomes more and more deficient.   There's eight essential B vitamins that our bodies cannot make, so they must come from our food and supplements.  These eight B vitamins work together, like instruments in an orchestra.  They need to be supplemented together with essential minerals like magnesium.   Deficiencies in the B vitamins can have overlapping symptoms.  Some symptoms can be traced to specific B vitamins.  OCD can be traced to low Pyridoxine Vitamin B 6.  Yes, I had OCD and washed my hands until my skin cracked and bled.  ADHD symptoms can be traced to low Thiamine Vitamin B 1.  ADHD is something one is born with.  People who are born with ADHD have a metabolic problem with getting sufficient thiamine into their brain cells.  People who develop symptoms of ADHD later in life are more likely to be low in Thiamine.  The same symptoms appear if one is not getting sufficient thiamine from the diet.  Yes, I developed symptoms of ADHD.  These symptoms improved and disappeared after supplementing with Thiamine and the other essential nutrients. I was diagnosed with Type Two Diabetes.  99% of diabetics of both types are deficient in Thiamine because our kidneys don't re-absorb thiamine properly.  Thiamine is needed to make insulin and digestive enzymes in the pancreas.  Poor digestion (floating, undigested stools) can result with insufficient pancreatic enzymes.  The gall bladder (upper right quadrant) needs thiamine to make and release bile which also helps with digestion.  Constipation is also a symptom of Thiamine and magnesium deficiencies.  The thyroid is another organ that uses lots of Thiamine, too.  Low thyroid hormones can be due to insufficient thiamine, selenium, iron, and iodine.  Swelling of hands, face and feet are also symptoms of thiamine insufficiency.   Our bodies use thiamine to make energy so organs and tissues can function.  Thiamine cannot be stored longer than three weeks.  If our stores are not replenished every day, we can run out of Thiamine quickly.  If we do get some thiamine from our diet, symptoms can wax and wane mysteriously, because a twenty percent increase in dietary thiamine causes an eighty percent improvement in brain function and symptoms.  Thiamine interacts with all the other vitamins in some way.  Many other vitamins and their metabolic processes won't work without thiamine.  In Celiac Disease you are apt to be low in all the essential nutrients, not just thiamine, but thiamine deficiency symptoms may appear first. Talk to your dietician about eating a nutritionally dense gluten free diet.  Keep in mind that processed gluten free foods do not contain sufficient vitamins to be useful.  Processed gluten free foods are filled with saturated fats and excess fiber (that could explain your constipation).  Dairy products, milk and cheese can cause problems because Casein, the protein in dairy, causes the same autoimmune reaction that gluten does in some.  Your current restricted diet is dangerous to your health.  I followed the Autoimmune Protocol Diet (Dr. Sarah Ballantyne).  It's a Paleo diet that promotes intestinal healing.   Discuss with your doctors about correcting nutritional deficiencies as soon as possible.   Interesting reading... https://pubmed.ncbi.nlm.nih.gov/34165060/ https://pubmed.ncbi.nlm.nih.gov/21816221/#:~:text=Lipid-soluble thiamin precursors can,and attention deficit%2Fhyperactivity disorder.
    • max it
    • cristiana
      My chest pain has been caused by costochondritis, as well as times when iron supplements has given me such bad bloating it has put pressure on my back and chest, and reflux can do the same. Also, along the lines of Wheatwacked's suggestion above, is it possible you had an injury to your chest/ribs way back that is being set off by either some sort of gastrointestinal bloating/discomfort? I distinctly remember really hurting a rib over forty years ago when I misjudged a wall and thought it was just behind me but in fact it wasn't.  I fell badly against the wall and I think I cracked a rib then.  For some strange reason I didn't tell anyone but I think had I gone to hospital an X-ray would have revealed a fracture. I think that rib has not been right since and I am sure that bloating makes it worse, as well as heavy lifting.
    • Dora77
      Sorry for the long post. I’m 18, and I was diagnosed with celiac disease and type 1 diabetes (T1D). My transglutaminase IgA was >128 U/mL, EMA IgA positive twice, and I’m HLA-DQ2 and DQ8 positive. I’ve been completely asymptomatic since diagnosis, even when I cheated with gluten sometimes in the past and used to eat out(2-5 years ago) I don’t get the typical celiac reactions, which makes it really hard to know when (or if) I’ve been glutened. But for the past year, I’ve been the most strict with my diet, and that’s also when a bunch of new issues started. I eat completely glutenfree, never eat out, dont eat food that says „may contain gluten“.   Current Health Problems • Floating, undigested stools for over a year now. Dont think its related to celiac as it was like this since im 17 and not 13-16( i got diagnosed at 13). • Chronic back pain started gradually, worsens with movement, lots of cracking/popping sounds. Been ongoing for a year now. First noticed in the gym. • Abdominal bulge on the right side, not painful but seems to be getting slightly bigger. Doctor didn’t find a hernia on ultrasound, but it was done lying down (I’ve read those can miss hernias). Noticed it like 6 months ago, couldve been there longer. • extremely dry and mildly swollen hands (this started before I started excessive hand-washing), and bloated face. • Signs of inattentive ADHD (noticed over the past 3 years), now combined with severe OCD focused on contamination and cross-contact. • Growth/puberty seemed to started after going gluten-free. Before that I was not developing. Dont know if any of these are because of celiac as my dad doesnt have those and he is a lot less strict gluten-free then me. I also had pancreatic elastase tested four times: values were 46 (very low), 236, 158, and 306 (normal). Gastroenterologist said one normal value is enough and I don’t have EPI. Family doctor prescribed Kreon anyway (after I pushed for it), and I just started taking 1 capsule (10,000 units) with meals 2 days ago, but couldn‘t see effects yet because I’ve been constipated the last few days. Maybe because of thyroid. I don’t have Hashimoto’s. No thyroid antibodies. But I took levothyroxine for slightly low FT4 levels. My thyroid levels fluctuated between borderline low and low-normal. And recently lowered my dose so that may have caused the constipating. I probably didn’t need it in the first place, and am thinking about stopping it soon.   Current Diet Right now, I only eat a very limited set of “safe” foods I prepare myself: • Gluten-free bread with tuna or cheese • Milk and cornflakes • gluten-free cookies/snacks • Bananas (the only fruit I trust right now) I rarely eat other fruits or vegetables, because I’m scared of contamination. My dad, who also has celiac but doesn’t care about CC, buys fruits, and he might’ve picked them up right after handling gluten bread. That makes me feel unsafe eating them. Even fruit at stores or markets feels risky because so many people with gluten on their hands touch them.   My Home Situation (Shared Kitchen) We’re a family of 5. Only my dad and I have celiac. He eats glutenfree but doesn’t care about CC and sometimes (but rarely) cheats. My mom and siblings eat gluten bread at every meal. My mom is honest (so if i ask her to be cautious, she most likely would try to), but doesn’t seem to understand how serious celiac is. She: • Stopped using gluten flour • only cooks gluten-free meals (but they still heat up gluten bread and also cook gluten noodles) • Keeps separate butter/jam/jars for me • Bought me a stainless steel pan Bu we didn’t replace old wooden utensils, cutting boards, or other pans. The new they bought me pan was even carried home in a shopping bag with gluten bread in it, which triggered my OCD. It also has a rubber handle and I’m scared it might still hold onto gluten. Even if it’s washed well, it’s stored next to other pans that were used for gluten food/bread. Our kitchen table is used for eating gluten bread daily. My mom wipes it but not with soap. I’m scared tiny particles remain. If she made gluten-free bread dough on a board at the table, I’d still worry about cross contmaination contamination even with something under the dough and on the table as at one point the dough would probably touch the table. So I stopped eating anything she makes.   I know OCD is making it worse, but I can’t tell how much of my fear is real and how much is anxiety. Examples: • I wash my hands 20–30 times a day — before eating, after touching anything at home or outside, after using my phone/laptop. • I don’t let others touch my phone, and I’m scared to use my laptop because friends at school or my brother (who eat gluten) have touched it. And it annoys me a lot when others touch my stuff and feels like it got contaminated and is unsafe instantly. • I stopped eating while using my phone or laptop, afraid of invisible gluten being on them. • I wash my hands after opening food packaging (since it was on store cashier belts where gluten food is placed). • I avoid sitting anywhere except my bed or one clean chair. • I won’t shake hands with anyone or walk past people eating gluten. • At school, when switching classes, I wash my hands before getting out my laptop, again before opening it, etc. • I open door knobs with my elbows instead my hands   Job Concerns (Powder Coating, Sandblasting, Etc.) I’m working a temporary job right now that involves: • Powder coating • Sandblasting • Wet spray painting • Anodizing There’s also a laboratory. I don’t need this job, and my OCD makes me believe that dust or air particles there might contain gluten somehow. Should I quit?   Doctors Haven’t Helped My family doctor told me: “Asymptomatic celiac isn’t serious, if you have no symptoms, your intestines won’t get damaged, so you don’t need a gluten-free diet.” I knew that was wrong, but he wasn’t open to listening. I just nodded and didn‘t argue. My gastroenterologist (who’s also a dietitian) said: „If your antibodies are negative, there’s no damage. It might even be okay to try small amounts of gluten later if antibodies stay negative.“ Also said, pepper that says “may contain gluten” is fine if it only contains pepper. She was more informed than my family doctor but didn’t seem to fully understand celiac either.   Questions I Need Help With 1. Is it realistically safe to eat food my mom cooks, if we get separate pans/ and boards even if gluten is still used in the same kitchen? There will always be low risk of cc chances like that she will still touch stuff that was touched by her and my siblings after they ate gluten. And as there are gluten eaters in the house and she also prepares and eats gluten. So would opening the fridge then getting the food and touching the food be okay? So basically what i am doing, washing my hands multiple times while preparing food, she would only wash it once before, then touch anything else (for example water tap or handles) that were touched with gluteny hands, then also touch the food. I dont know if I ever could feel safe, I could try telling her how important cc really is. And I trust her so she wouldnt lie to me then be careless about cc, but idk how safe it really can be if she and everyone else keeps eating gluten and touching stuff in the house after eating. 2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage. 3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy? 4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust? 5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.) 6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?  7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful? 8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if its gluten or something else but our dish washer doesnt seem to make it completely clean. 9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.  10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers. 11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.  12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc. I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore. Thanks for reading.
    • lmemsm
      I've been making a lot of black bean brownies lately because it's one of the few gluten free dessert recipes that actually tastes palatable.  I've also seen chocolate cake recipes with black beans.  Someone mentioned a cookie recipe using lentils in place of flour.  Just wondering if anyone's run across any tried and true recipes using beans, lentils or peas for desserts?  I've seen a lot of recipes for garbanzo flour but I'm allergic to garbanzo beans/chickpeas.  Was wondering if adzuki or pinto beans might be useful in replacing some or all of the flour in baking.  Since gluten free flours can be crumbly was hoping the beans might help produce a better, less crumbly consistency.  Any recommendations for recipes?  Thanks.
×
×
  • Create New...