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I Think My Husband Has Celiac


PrincessKitty

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PrincessKitty Rookie

I have to say I am extremely excited to have found this board. Just poking around, I have discovered a wealth of information.

My husband has been dealing with a blistery rash on his head for the past year. He's gone to 10 dermatologists, had lots of tests, and spent a lot of money in prescriptions. Finally, after a visit to the ER, we were recommended to an alternative specialist that suggested that perhaps he had celiac disease (among other suggestions). Since our visit there almost two weeks ago we have pretty much cut out gluten in his diet. My husband is having a difficult time with it and sometimes will get slack and not check labels. He said he was "starving" the other night and ate the one box of cereal that we still had in the house that wasn't gluten free (Shredded Wheat of all things) and promptly got sick in our bathroom.

Besides the rash/boils on his scalp, his other symptoms are chronic headaches/migraines, neck pain, constipation, bloating, depression, foggy brain/confusion, sleep problems, anxiety. He was also recently diagnosed with hypothyroidism. His levels were only a little bit off but they still haven't gotten that regulated. If this is all related to celiac, I can't even tell you how much money will save on prescriptions in a year! He is having the blood test today but has been about 80% gluten-free the past week or so. Will it still come back positive? Even if it doesn't come back positive, I am almost certain this has been his issue all along and am so beyond frustrated with the medical system that we have been dealing. His doctors made it a point to tell him that it was highly unlikely that his skin condition was related to diet.


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grainfree Newbie

Welcome! What wonderful support your husband has from you! It is quite amazing to realize the cause of this disease, regardless of the opinion of the medical community. Many on this forum have reported false-negative results even when maintaining a full gluten diet, and as such have chosen a gluten-free diet regardless of testing outcome. The waiting does cause impatience, but from many on this forum, the gluten-free life is worth it.

This site is a great source of information regarding DH and celiac disease. I know that it will help you both immensely. I wish you both the very best of good health.

ang1e0251 Contributor

His extreme reaction to the gluten is telling to me. Even if the blood test is negative, keep pushing forward with your idea. If the dr wants him to have an endoscopy, then he needs to continue to eat gluten for the test, don't take him off. If he doesn't want more testing, then just follow the diet and keep track of the results. But don't let him be hungry, it's easy to make mistakes that way. Make sure he has all the safe food he needs. He may experience extreme hunger for awhile. That's OK, lots of people do. Just have all the food he can handle available to him at all times.

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    • trents
      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
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    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
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