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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Cromolyn Makes My Food Reactions Less Intense
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14 posts in this topic

Oral cromolyn sodium is a mast cell stabilizer.  It's used for people with mastocytosis and food allergies. 

I have food reactions of a pretty typical sort - characterized by a groggy (dazed, mentally impaired) state that starts coming on about 1/2 hr after eating the food and comes on fully 4-5 hrs after eating and lasts about 4 days; other symptoms may include physical clumsiness; diarrhea (usually I don't get diarrhea); itching; frequent urination; and psychological effects like irritability, emotional hyper-reactiveness, tension.

I wanted to be able to take Singulair for my inhalant allergies.  Singulair helps with the late-phase aspects of allergic reactions - it decreases the fuzzy-headed, difficulty thinking, foggy, low energy state.  But I had a hard time finding Singulair from a compounding pharmacy - I do have a food reaction after Singulair tablets from a regular pharmacy.

So I started cromolyn.  It's something you take 4 times/day before meals, the effects build up over 2-3 weeks. 

I found that if I took cromolyn before the Singulair tablet, the food reaction was much decreased. 

Since cromolyn is a mast cell stabilizer, this suggests that my food reactions involve mast cells.

The usual dose of cromolyn is 200 mg 4x/day, and one can increase it to 400 mg 4x/day.

Cromolyn usually comes as Gastrocrom, and it's hugely expensive.  But, I was able to obtain it in powder form from a compounding pharmacy  and they only charged me $129 for 120 200 mg capsules.  The pharmacy I used was America's Compounding Center, apparently they use a supplier that was able to get this drug inexpensively.  Another compounding pharmacy wanted a much higher price for it. 

So you might be able to liberalize your diet for $129 per month - or maybe, twice that at the higher dose of cromolyn.

If you want to try cromolyn without a prescription to see if it works, you can take it as Nasalcrom, which is over the counter.  Nasalcrom is the nasal spray version of cromolyn, it's a liquid.  Nasalcrom does contain benzalkonium chloride and edetate disodium as preservatives, so it might not be a good idea long term - the dose for oral use is much higher than the dose used as a nasal spray.  Possibly the preservatives might disturb one's gut microbial ecosystem, so taking Nasalcrom orally may not be a good idea long-term.  But I used Nasalcrom to minimize the allergic reaction to the Singulair tablets, before I got a prescription for oral cromolyn, and I didn't notice any bad effects. 

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Just curious why you would be eating things that you know cause a reaction! 

 

As for the Nasalcrom, daughter and I were prescribed this for our allergies and all it did was give us severe nosebleeds.  Singulair didn't help us either.

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As I said I needed to be able to take Singulair for my inhalant allergies, and I'm allergic to fillers in the tablets. 

 

Actually cromolyn might turn off the food reactions enough so someone can go ahead and eat foods they couldn't before (but it doesn't cure celiac disease).  The usual dose is 200 mg 4x day before meals, I read that that can be doubled if necessary (but check with doctor).  I'm taking 400 mg cromolyn half an hour before the Singulair tablet, so I'm using a double dose to turn off the allergic reaction. 

 

Cromolyn may also PREVENT becoming sensitized to new foods.  Some research I saw, suggested that.  I developed allergies to several foods that had been OK, even though I was on a gluten-free diet. 

 

Nasalcrom is OTC in the USA.  So you may be talking about another drug. 

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How do I go about ordering from America's Compounding Center? My symptoms sound fairly similar to yours. I am reaching a point where I need something to minimize these constant reactions im having.

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How do I go about ordering from America's Compounding Center? My symptoms sound fairly similar to yours. I am reaching a point where I need something to minimize these constant reactions im having.

There doesn't seem to be a rule here against mentioning commercial contacts -

So, ACC's ph no. is 866 222 7993.  They do a lot of compounding, and they're good at getting stuff.

Someone else said ketotifen works better if you can get that.  ACC also has ketotifen.

It's worth checking with more than one compounding pharmacy, because prices may vary a lot. 

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There doesn't seem to be a rule here against mentioning commercial contacts -

So, ACC's ph no. is 866 222 7993.  They do a lot of compounding, and they're good at getting stuff.

Someone else said ketotifen works better if you can get that.  ACC also has ketotifen.

It's worth checking with more than one compounding pharmacy, because prices may vary a lot. 

 

Sounds good. Does the cromolyn ship in raw powder form or are there fillers? Considering I have many allergies, I am very cautious about fillers and capsules.

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Sounds good. Does the cromolyn ship in raw powder form or are there fillers? Considering I have many allergies, I am very cautious about fillers and capsules.

They get the pure powder, but usually they have to add a filler so the capsule will be filled.  I ask for baking soda as the filler - it's inorganic, no protein in it so I've never had a problem with it.  And I don't eat the capsules, only the contents. 

Similarly for ketotifen. 

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You can get the Ketotifen here 

 

https://www.mimaki-family-japan.com/products/detail.php?product_id=32882

 

They also stock Cromoglicic acid here (Gastrocrom)

 

https://www.mimaki-family-japan.com/products/detail.php?product_id=33767

 

But as it's much more expensive and you have to take more of it, maybe you want to see how the Ketotifen goes for you first.

 

That shop is excellent and they ship via EMS, it only takes a few days to arrive providing your country has laws which allow you to import drugs for personal use. (In Australia you can get a 3 month supply per shipment). So lucky to have that law because I'd have no way to get Ketotifen otherwise and it's hugely helping me.

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One advantage of cromolyn over ketotifen is that it's absorbed very little, so it doesn't make you drowsy. 

I've tried drowsy antihistamines and been miserable - I'm out of it a lot because of inhalant allergies anyway, and the drowsiness from the antihistamine on top of that is miserable.  (ketotifen likely causes drowsiness because of the systemic antihistamine effect)

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Well that's true the Ketotifen is a very strong sedative, it's many times more powerful than say Zyrtec in that way. Although in saying that I never did get used to the Zyrtec, in fact I think I get less used to it over the months. With the Ketotifen it really hit me hard for the first few times I took it and now it's OK. Still, I wouldn't be able to use it if I was a truck driver or something where I had to be 100% sharp for long hours.

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I used topical Cromolyn in a skin cream for my DH. It worked a bit, some if the time...at a certain stage in the lesion.

I bought the liquid Cromolyn and poured it in the skin cream.

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I had a food accident yesterday - out of stress I guess, I bought some pomegranate/blueberry juice that I thought was pure pomegranate juice. 

I'd taken 400 mg cromolyn 2.5 hours earlier.  I'm not sure how much that dose had worn off.

I took 400 mg more cromolyn right after the blueberry-juice accident.  I don't know whether chasing an allergenic food with cromolyn helps or not.

But anyway, my reaction was relatively mild.  I'm still coping.  Without the cromolyn, food accidents make me quite irritable and emotionally reactive, but I don't feel particularly irritable, having taken cromolyn. 

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They get the pure powder, but usually they have to add a filler so the capsule will be filled.  I ask for baking soda as the filler - it's inorganic, no protein in it so I've never had a problem with it.  And I don't eat the capsules, only the contents. 

Similarly for ketotifen.

 

Thanks for all the info. Do you need a prescription for the cromolyn sodium?

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Well I finally got the prescription, and tried ordering it from Americas Compounding Center, but apparently they wont ship to my state (Illinois) due to some licensing issues.

 

Does anyone know any other good compounding pharmacies that are super careful about allergens?

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